“Male Ego and Autistic Progeny”

male-ego Ego is a funny thing.  It makes people proud and vain at one end of the scale or insecure and paranoid at the other.  It isn’t therefore, necessarily a good thing to possess.  But most people have one, unless they have learned to master it and let such burdens go.  The male ego is something that is famously guarded, it’s something females are not supposed to dent.  A man must not feel his “masculinity” is under question.  Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.

When a man becomes a father, he often seems to see the progeny as a reflection of himself.  The participation of his seed in the process seems to take on a role larger than it played in reality.  It’s almost a primal thing.  He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self.  This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.

Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism.  Stories abound on community forums by such mothers, here is a sample:

  1. http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/father-ex-husband-denial
  2. http://www.circleofmoms.com/autismaspergerspdd-awareness/i-need-help-my-husband-will-not-discuss-or-even-acknowledge-our-son-s-diagnosis-398383

Media articles and blog posts too:

  1. http://www.telegraph.co.uk/women/mother-tongue/9602643/Accepting-Autism-one-fathers-path-to-understanding-his-son.html
  2. http://www.popsugar.com/moms/When-Mom-Accepts-Child-Disability-More-Quickly-Than-Dad-27330829

Let me tell you what that type of ego-driven denial can do to a child and the family.

Mothers usually know their children intimately.  OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does.  Mother’s instinct is a very strong thing.  Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body.  They learn every habit, nuance, whim and personality trait of that child.  They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot.  Of course, if a child is severely autistic it will be blatantly obvious from early on.

So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child.  She will question herself, tell herself she’s worrying too much.  And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too.  Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments.  He will cause self-doubt and insecurity in the mother.  He’s worried about his child being stigmatised and the disability being a reflection on himself.  So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.

You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up.  This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time.  Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much.  And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.

So mum may resort to internet research to help confirm or deny her fears.  The pet hate of the vast majority of doctors is internet research.  No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors.  Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”

Mother Research

Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious.  Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.

What does lack of diagnosis do to a child?  They exist in a world of social confusion, struggling with friendships and not knowing why.  They likely have sensory issues and find the world a painful place, wondering why life is so difficult.  They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences.  They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it.  They are likely to think themselves weird and wonder why they don’t fit in or feel like other people.  They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them.  They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult.  Mainstream school is very hard for most autistics and impossible for some.  But without a diagnosis that’s where they will be.  Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before.  By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.

The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point.  And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner.  I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support.  Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge.  So who is any parent to deny their child that right?

The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved.  For instance, some dads believe a meltdown is the child being naughty and will treat it as such.  If a child school-refuses, they may blame mum for not being firm enough.  This will likely end up being the cause of a less than close relationship between father and child.

Ostrich

So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen.  What have you got to lose?  If the child is not autistic they won’t be diagnosed.  If they are, you will be enabling them to access the support they need.  The diagnosis only needs to be disclosed on a need-to-know basis.  If the child’s difficulties are that obvious people will have noticed already anyway.  No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must.  And you want your child to have the right support.  The earlier the intervention the better for their longer-term outcomes.  You owe that to your child.  After all, this is not about you, it’s not a choice, it’s a necessity.

 

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“Anosognosia and Autism – A Real Concern”

anosognosia_lobe_capture2
Image courtesy of http://www.treatmentadvocacycenter.org

Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex.  It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder.  This means, that the brain differences in those conditions, are damage to the normal functioning of the brain.  Sometimes, the term anosognosia is used to describe denial of the diagnosis too.  I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.

There is however, a dearth of literature on anosognosia in autistics.  Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia.  So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism.  Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it.  That’s not actual anosognosia though, time usually resolves this reaction.

Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons  for them.  I believe this can  contribute to anosognosia.  My eldest autistic child seems to have true anosognosia.  Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis.  And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her.  She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story.  I thought it was fear and being an adolescent that made her refuse to believe it.  But over time, I have come to realise that it’s more than that.  When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties.  Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.

She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation.  When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues.  She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help.  When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up.  When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless.  It’s very hard parenting a child who thinks this way.

Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to.  She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope.  She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”.  Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression.  She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months.  Yet she is a very intelligent child, academically excellent with a very superior vocabulary.

So over time, I realised that her denial, is beyond being mere denial.  It’s a literal belief that she really isn’t autistic, an inability to believe it.  Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her.  I thought time would make her come to terms with it, but it hasn’t.  If any support offered has been autism-related, she refused it.  She has refused social opportunities that would help expand her horizons, yet is upset at having no social life.  As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is.  She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’.  She misunderstands people a lot, she thinks people have been mean all the time.  She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.

But this worries me.  Quite a lot.  Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be.  Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood.  Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality.  Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable.  She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!).  She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.

At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity.  Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so.  And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside.  They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind.  She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected.  Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time.  High-functioning autistic females can also be masters of camouflage and masking.  And parents are elbowed out of the picture sharpish when children reach a certain age.  She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”.  So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it?  What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position?  Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources.  What happens with in situations such as DLA/PIP interviews, if they arise?  She will deny any difficulties and likely lose her DLA.

So I asked myself, do I get a professional to state on record that she has anosognosia?  Trying to foresee the implications of that causes new concerns.  On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems?  What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change?  Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen.  It’s a scary prospect.  And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them?  There are so many potential issues with this.

I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it.  Autism is an integral part of who someone is, you can’t separate it out.  If someone needs help, it’s important that they recognise that and accept help from others.  How can someone grow and problem-solve in their life if they don’t understand themselves?  We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it.  And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.

The Autism Parent’s Social Diary Poem

female robotHere we go, off to CAMHS again
Fighting the LA is such a pain

Another meeting with the school
Where they will treat me like a fool

Need to call Parent Partnership yet again
Must go to the GP with kiddo’s belly pain

Drat, is SENDIST really so close
Now what is that probiotics dose

Need to get a melatonin scrip
Then off to the SENCO I have to nip

The EHCP needs amending
And the LA is ever unbending

Oh yes, the appointment with the EP
Trouble is, I have no time free

In-between dealing with meltdowns galore
There are no ‘not-too-tight’ socks in the drawer

Where are the ear defenders I bought
And the scissors to reduce labels to nought

Surely today, will be calm after school
If not, it really won’t be cool

You’re joking, already the EHCP review
But we have the OT, so what shall we do

I remember reading when I had the time
I remember enjoying a glass of wine

I vaguely remember what it meant to go out
But now all the days in my diary are crossed out

Full of endless battles and meetings galore
There is no time for anything else any more

The Uncharitableness of Autism Charities

 

wolf in sheeps clothing Sometimes, you can feel no choice but to speak out about wrongs you encounter.  Sometimes, something happens which triggers you to do so.  Today was one of those days.  This is the tale of autism charitable organisations at both national and local levels.

The seed to this post was sown, when I started questioning what autism charities actually do, initially based on my own experiences but then reaffirmed by liaising with others who had  found the same, as well as reading about the experiences of others on forums.  A little bit of reading of some accounts bolstered these views still further.

A few facts about the National Autistic Society (NAS):

The NAS‘ income includes Government funding and also public donations.

71% of it’s  funding goes on staff costs, leaving only 29% for everything else – including actual support for autistics.  This staff, includes staff for it’s schools and admin staff. NAS schools support only 500 autistic children across the UK.  The UK has a population of around 150,000 autistic children.  So…tokenism?  Smoke and mirrors?  A very conservative estimate of how many autistic adults there are in the UK, is based on 1%, 641K – but I have seen the figure quoted as 700K and research shows that for every 3 diagnosed people there are at least 2-3 undiagnosed (and it also cites the rate as 1 in 64).

I once asked some questions about their accounts on the NAS’ Facebook page, I was instructed to message them privately – as if they were scared to let the cat out of the bag and then they blocked me from commenting at all, no reason given.  All I had done was quote some figures from their accounts and make associated points. (you can read their accounts here.)

The NAS runs campaigns, does surveys from which they produce reports, has lots of information about autism on it’s website and runs conferences and training courses.  Of course conferences and training courses are at a charge to delegates and attendees, to at least cover their overheads in running them.  They also have some regional coffee mornings etc. and people can apply to be NAS ambassadors to run things under the NAS flag.

But what physical difference do most autistics feel from such an organisation?  How does it translate on the ground, in day-to-day life?  The NAS has a helpline, when I once called it prior to my youngest child’s diagnosis (whilst on the waiting list to be seen), I was told “We can’t help you without a diagnosis.” and that was that.  I was stunned, as well as left high and dry.  On other occasions having used their email helpline, I discovered that they could not take any action to assist in any form and they sent generic information and links, all of which I had already tried the avenues for, before reaching out to them for help.  And some of their replies took about 4 months to arrive.

The NAS has also failed to speak out about the issue of parents in autism families being falsely accused by professionals, with those accusations sometimes even resulting in children being taken from their families.  They are fully aware of it, they even ran safeguarding workshops to see what angles professionals were dealing with autism families from.  An email conversation and long telephone conversation with a relevant member of NAS staff is also how I know how very aware they are of this problem.  But they have not spoken out publicly whatsoever.  They took the softly-softly approach with the safeguarding workshops, I attended one.  They did not challenge a horrific CAFCASS professional there, who had the most shocking ‘parents are the enemy‘ attitudes towards the family in the role-play.  The most they have stretched to, is giving one such falsely accused parent speaker, Tim Gilling (who also happens to be Deputy Chief Executive and Director of Health and Social Care at The Centre for Public Scrutiny), a platform at a January 2015 safeguarding NAS conference “Getting it Wrong: The Impact on Families” https://www.youtube.com/watch?v=RDKS6NmAEWo  (Most parents however will never have such a platform and no recourse or help, when they find themselves falsely accused, and most professionals will carry on regardless).

Where was the NAS when Monique Blakemore of Autism Women Matter went to the United Kingdom Human Rights Committee “Human Rights Violations Against Parents That are Autistic, Have an Autism Spectrum Condition“?  Why didn’t they publicise the call for research participants for the important survey on autistic motherhood on their website?

I have previously contacted the NAS’ campaigns department over important issues that need raising by them, they are after all the UK’s main autism charity and so have the largest voice and it could be argued, the largest responsibility.  They didn’t respond on any occasion.  I also had cause to contact their legal department over an issue involving an authority’s breach of various laws in regards to autism, three emails and a year later, they never responded there either.  Not a bean.

I additionally contacted them asking for their assistance in organising a fashion show to highlight the issues of females with autism being under-diagnosed.  They were initially enthusiastic – when they thought I wanted to do it all myself and they would just put their name to it as a ‘supporter’.  Why not after all, free publicity which makes them look good.  But once I clarified that I wanted them to fund it and help source a venue etc. they told me their funds were all already spoken for and they couldn’t help.  Really?  What are ticket sales for then if not to cover costs?  And surely a charity’s funding is there to highlight issues for the people it represents anyway.

The NAS cannot police the Autism Act 2009 or the Autism Strategy 2010 (and nobody else is either).  They never highlight that the Government is not policing it either, at best only pointing out how local authorities are faring on implementation of provision across the UK.  Don’t bite the hand that feeds you eh?

A recent post on their Facebook page was met with a string of comments of people speaking out about how neither they nor their children saw any benefit from the NAS and asking what their funding was being spent on.  Some of these people send monetary contributions to the NAS and pay to be members.  As I used to, but found the quarterly magazine didn’t confer any practical help in everyday life and membership didn’t benefit me in any way.

No Better the Devil You Know…

dancing with the devil

But it’s not just the NAS.  I have encountered a dismally woeful and shocking provision from a local Asperger’s charity which has also shown me how these organisations fail the  very people they are set up to support.

This charity, among other things, assists autistic people with benefits such as DLA by liaising directly with the DWP on their behalf (phone calls and letter writing can be difficult for autistics, especially dealing with layers of departments to get through and staff who don’t explain things clearly).  I gave them authority to do this for me, by signing their requisite letter and was assigned a caseworker, who I met.  Twice.  Other autistics will understand what I mean when I say, that being required to attend meetings is often very stressful, meeting new people is very stressful.  Communication itself, is at times stressful.  It’s a condition with social communication problems, so doesn’t it go without saying?  Other parents of autistic children will also understand when I say, that supporting an autistic child requires a lot of work, assessments, meetings, reports, forms, frequent school liaison, EHCPs, DLA, tribunals …ad infinitum.  When you have two autistic children as I have, you can double the stress, exhaustion and time involved.  When you also have autism yourself…well, you get the picture.

So when this caseworker (who had a pattern of being very tardy – and sometimes non-existent – in responding to status update request emails, involving lots of waiting and chasing) went on maternity leave without a word to me, or what was happening with my case (and apparently not handing it over to anyone either), leaving matters (it transpired) unresolved and with much time having wasted, needless to say this was difficult for me.  In chasing up and finding out there was a new caseworker, he was insisting on me going to meet him at their offices, it was even more difficult.  Especially as they knew I had a school-refusing child on my hands and it involved a train journey to-and-from a not well-served station and multiple other regular commitments to contend with – plus having Ehlers Danlos Syndrome, I am frequently physically exhausted.  Finding out that his manager backed him up on this demand, despite that I had previously met his predecessor and they had all my personal papers and details and therefore knew exactly who I was.  I reminded them that I was entitled to reasonable adjustments and that it was very difficult for me to comply with their request, but they wouldn’t budge, so reaching stress overload with it, I ended up cancelling use of their  service – even though it meant me taking on a challenging matter alone, the like of which they were set up and funded to help people with in the first place.

Fast forward to today, they sent me some of my DLA post they had received, reminding me indignantly (replete with exclamation mark and the envelope only having reached me by great luck, the charity caseworker having totally missed out the whole first line of my address resulting in an associated Royal Mail sticker on the envelope, telling me to inform the sender and with RM having worked out where to send it) that I should have notified DWP of the change in arrangements.  At no time when they ceased providing me their service, had they told me I needed to do this.  As it was them who instigated the arrangement with my signature of authority, I assumed they would have taken whatever action was required to reverse this.  Us autistics tend to take things at face value, we are not good at predicting or knowing peoples’ intentions.  And I kinda had a whole host of other things I had to deal with taking my attention too.  So, with my PC freezing, making emailing impossible at the time and feeling this needed imminently dealing with (indignant exclamation marks can make you feel that way), I had to ‘bite the bullet’ and phone this charity.

Just phoning them dredged up the emotion and stress they had caused me previously by refusing to meet my reasonable needs  and putting barriers in the way to assisting me, so when I asked for the manager (didn’t trust the caseworker with his exclamation marks and inability to even address the envelope correctly) I expected it to be simple to resolve.  How wrong I was.  For the duration of this call, I was made to feel I was in the wrong and that they had tried to be so flexible.  Autistics can find using the phone very hard, I am one of them.  It’s hard knowing when it’s your turn to speak and often you misjudge and can blurt out your points – often at moments you are intending to be helpful, but also the act of communicating over the phone is fraught with uncertainty.  So when this manager started to say something and I uttered a short contributory sentence related to what she was saying, she tersely told me “Can you let me finish!”  How silly of me to expect an autism charity to be autism-aware.  It was like being a naughty schoolchild being told off.

I explained how stressful it was having this situation arise, especially after them having caused all these delays in the first place and having refused to proceed without putting me through another stress-inducing meeting.  She couldn’t see it – and she wouldn’t have it.  She told me they had tried to be flexible by offering to come to my home.  But I am not alone among autistics in hating having people come into my home, especially strangers.  And by the point this had been suggested, they had already ramped up my stress by being obstructive and causing me to worry about the whole DWP issue still being unresolved, due to the previous caseworker not dealing with it during all that time, that this was no good either.  It wasn’t even a policy requirement – this was their personal preference!  I again questioned why they needed to meet me again at all.  The manager staunchly defended the caseworker’s insistence on a meeting, saying she too “…would feel uncomfortable assisting someone they had never met, with something”.  I asked how it was right, that an autism charity would put their own personal feelings above the very people they were set up to support.  She had no answer for that.  Stony silence.  I pointed out that even if it was a policy, I would be entitled to reasonable adjustments in having things done differently, according to the Equality Act 2010 and was told that they knew all about the Equality Act as they advised other organisations on it!  I was given buckets-full of excuses as to the reasons previous handling of my case was so delayed – including part-time staff, people going off sick etc. – despite these supposed pressures, they still had the time to insist on superfluous meetings based on their own personal preferences (do busy people with a lack of resources have time for such things!).

The emotion of having to deal with this whole scenario had made me upset.  My voice was wobbling.  You could hear I was upset, though I definitely wasn’t shouting.  But instead of offering sympathy and empathy, this manager told me accusingly “you’re raising your voice!”.  I truly wasn’t, I had not been rude or offensive in any way and it was clear this was upset and not anger.  Aside from the fact that voice prosody in autism is often affected as part of the condition and we can speak too loud without meaning to or knowing we are doing so anyway, so she should not have made such an accusation even if I had seemed to be raising my voice.  But she wanted to belittle me and accuse me, and had no understanding of autism.  She wanted to defend their indefensible actions.  I was blameworthy.  She even said to me “well sorry you feel that you’ve not had a good service” (this response is intended to imply it’s untrue, and you are blamed for having that wrongful view, or are being unreasonable – it’s almost legalese to deny liability).  This autism charity, funded by the local authority and barely hanging onto their funding as it is, was discriminating against me – the very person they are supposed to help.  Isn’t charity work about being caring and compassionate?  Isn’t it about having full understanding of the very people you support and meeting their needs?  Isn’t it about providing a service that is accessible and behaving responsibly?  Don’t they have a duty to use their hard-won resources correctly?

And when you point out the effects of what they have done wrong, to still not accept it and try to right the wrong, just makes it cruel.  Quite ironic that their website claims part of their service is to improve wellbeing!

And before I end this post, the ridiculousness of it is, I just had an email from said manager, telling me that the caseworker had only set up the arrangement to receive my post (what would be the point of that!)not to liaise on my behalf with DWP as she had told me she was doing!  So for all those months (at least a year) they were a glorified post office for me and any DLA issues that needed dealing with, I was totally unaware of.  Having handed me back a pile of correspondence that I now cannot face.  At least when I had to deal with it myself I knew where I was and what was outstanding.  And after all that, I am left with having to also now contact DWP to sort out redirecting my DLA letters, as this charity won’t reverse the arrangement they set up for me in the first place!  Who knows with all the other stuff I have to contend with, if or when I will be able to sort this out.

I can’t bear incompetence.  We all make mistakes, we are all human.  But to not have any pride in your work or thought for others in doing a good job and getting it right, especially in charitable work, to treat people with such disrespect and contempt is a gross failing.

Shame on them.  But this issue brings it home, that charities exist, flying their own flags bragging about what they do, with their staff no doubt patting themselves on their backs for their philanthropic endeavours (“Me?  Yes, I do charitable work luvvie.”), but it’s largely lip service.  The true measure of whether a charity is doing the right thing, is if as many people as possible benefit from the service, if they meet their service user’s needs, if they bother to learn about the condition they supposedly support and if they spend their money to benefit the people they serve.  Hence the wolf in sheep’s clothing – the outside is an admirable cause, but the inside is all about the money, self-serving, self-glorification and self-aggrandisement.  So I say to these charities:

charity justice quoteYour Job

Judgmental Looks, Tuts and Glares

judging  As any parent of an autistic child will tell you, people can be really judgmental.  Autistic children can have meltdowns wherever you are, in shops, parks, family outings… you name it.  When the child is very young, you may get an understanding smile from another parent, who views it as an ordinary toddler tantrum, but as the autistic child gets bigger, the looks become more and more disapproving.

You can almost hear their thoughts “Can’t s/he control their kid!”, “What a rubbish parent!”, “That child needs some discipline!”.

Some people are obnoxious enough to actually give filthy looks or make nasty or sarcastic comments, even to your face (occasionally even to the autistic child’s face).  Some, if they realise your child has a condition, can even make discriminatory comments about not bringing your child out in public.

How easy it is for those people, to have their perfect children, who don’t panic and start to meltdown because the shop is too busy or too hot, or the hand-dryers in the toilets are too noisy, or because the shop assistant spoke to them.  How easy it is for them to grab a bag and go out with kids in tow, without having to first identify if their child is having a good day or a bad day, think through whether the destination is going to be busier on that day, or whether it’s too hot and their temperature-sensitive child is going to become overwhelmed before half an hour has passed.  Or even whether as a parent, you possess the wherewithal that day, to deal with it, if anything like that does happen.

Autism parents don’t expect everyone to automatically know about autism, or what effects autism has on the person with it.  But we do expect that when they see a child who isn’t a toddler, having what looks like a toddler tantrum, they realise there is clearly something up that can’t be helped.  When they see that child repetitively and apparently aggressively questioning their parent, or loudly demanding x, y, z, they should think twice before they look child and parent up and down like dirt on their shoe.  (Yes, middle-aged lady in Asda, that was you, at your age I would have expected more compassion and understanding).  Because that child was in a panic they couldn’t control.

They should realise, that when they see a parent with such a big child behaving that way, the reason the parent is not telling their child off and is staying oddly calm, what looks to them like a passive ‘doesn’t-give-a-damn’ parent, is in fact a parent who knows their child has reached the point of being overwhelmed and the last thing they need is their parent shouting at them to behave.  That if the parent deals with it the wrong way, it could push that big child into aggression through sheer blind panic, that could affect members of the public around.  Is that what they would prefer?

And when their own perfect children all stop to stare open-mouthed, it would be nice if they could tell them not to stare with open mouths.  To lead them away and explain that the child cannot help it and it can make them even more overwhelmed if they realise everyone is staring.  And actually, yes, it is also rude.  And if you could also actually supervise your children, so they don’t gather in a circle round the autistic child, that would be appreciated too.  A little compassion goes a long way as they say.  While you have the luxury of not even watching your children, so may not even be aware they are treating an autistic child like a zoo exhibit, there is an autism parent who never gets a minute off, who has to supervise their child the whole time to keep them safe and ensure they are keeping their equilibrium.

While members of the public having perfect children, can go on holiday without a second thought, leaving them rested and full of beans, so that they have the energy to take such an interest in the lives of others and generate negative looks and comments, there are autism families who don’t get to take holidays at all.  Or if they do, they have to restrict themselves to certain types of holidays (perhaps nowhere involving an airplane, or no hotel – only detached chalets to avoid inflicting meltdowns on those in adjacent rooms, or no coach journeys) meaning potentially higher costs, less holidays overall or no opportunities to see the world and have a relaxing beach holiday.  Some autism families are unable to leave their children with friends or family because of their child’s needs.  So they can never have a ‘me time’ break or holiday.

So some sympathy, even some admiration would be welcome.  But when autism parents go out with their children, what they don’t need is judgmental looks, tuts and glares, nor sarcasm or nastiness.  Most autism parents are not receiving the support they should receive from health or social care, they are unpaid heroes doing their best to raise their children to achieve whatever is possible for them to achieve.  They are battered by having had to fight the system every step of the way for their child’s basic rights and the difficulties in being included in society.

So take a leaf out of this man’s book we don’t expect you to pay our tab, but this sentiment is what mattered most to the autism mum when her son had a meltdown in the restaurant:

God Bless Note

You may just restore an autism parent’s faith in humanity and feel better about yourself as well.

The Hidden Difficulties of Autistic Children in School

Cortical Chauvinism

One of our readers is the blogger for Planet Autism. We seem to have very similar ideas and understandings of the condition and have enjoyed lengthy conversations behind the blogs. In this regard I asked her to write a piece for corticalchauvinism.com and she complied. Usually I introduce the writer with some biographical information, this time she preferred to remain anonymous.

invisible disability

People, as a whole, often judge by appearances. It’s human nature. If someone looks dirty and unkempt, they are clearly either homeless, mentally unwell, or an addict of some sort. The quiet guy with glasses is a geek, the rotund woman with children and groceries is motherly and the wildly behaving child must have ADHD or be poorly parented. But at a subconscious level, we know that we could be wrong, “never judge a book by it’s cover” as the saying goes.

Autism is a condition that affects every…

View original post 1,030 more words

The Injustice of State Abuse

1984 George Orwell The increasing paranoia and accusations against parents, of “emotional abuse” and even “potential for future emotional abuse” has taken hold of the nation.  No parent alive in the UK today, is safe from such accusations.  If you are a parent of special needs or disabled children, your risk increases.  If your child (or you as the parent) have what is termed as an invisible disability (such as autism), the risk shoots higher still.  Ignorance of the presentation of some conditions that are classed as invisible disability, means that behaviours and family dynamics can be misinterpreted.  Unwillingness to admit they got it wrong, causes professionals to dig their heels in further and continue on the path they have chosen.  Dr Nigel Speight a doctor specialising in ME, gave an interview with a Dutch presenter on his own experience of supporting families falsely accused this way.  The Government is aware of this issue, but is protecting professionals who commit such state abuse, there is no accountability for these professionals and the hypocrisy that they are falsely accusing parents, yet causing the very thing they accuse the parents of, cannot go unnoticed or unchallenged.

I read a blog today, about the so-called Cinderella law, which could see parents face up to 10 years in prison for “emotional abuse” of their children.  I am angered at the fact that many special needs children in school, mainstream especially, are being emotionally damaged by their experience in the school environment, but this is not only ignored but considered as normal and acceptable.  Let’s list some environmental factors that social services might consider emotionally damaging to a child and due to which they would intervene:

  • showing children films and videos that they are too young for and are traumatic to them
  • turning a blind eye to mistreatment of the child
  • denying the child their basic human rights to drink water and visit the toilet when they need
  • brushing off the child’s concerns that are distressing to them, thereby denying them a voice
  • punishing the child unfairly
  • forcing the child to become aware of things they are not emotionally ready for
  • ignoring the child’s special needs and not adapting their environment accordingly
  • ignoring and denying the voice of the child regarding all factors in their environment

Rightly, you would expect social services to question the child’s parenting and possible emotional abuse of the child wouldn’t you?  Now take on board the fact that this is a list of just some of the environmental factors schools subject children to on a daily basis.  Not only is this accepted by the state, but it is actively condoned.  A disability social worker actually said to me “we won’t say anything against a school” and this was witnessed by an independent person.  If a child was showing such distress over their home environment as they do over school, social services would view this as serious harm and remove the child.  Yet a very senior person in social care told me, that my distressed autistic daughter must “get used to it” because “it’s a tough world for these children out there”.  Would they use this same justification if a parent had been responsible?

So why is there such a massive double standard?  How is such state abuse condoned?  The above list represents the average school day, and doesn’t even go into the cases where physical abuse and neglect have occurred in care homes and schools by their staff.  There are never repercussions for guilty parties either.

The state can trump up charges of “emotional abuse” at whim.  Many parents are finding that fighting for provision and support for their special needs child, triggers these false accusations as a result.  Here is an Autism Eye article on this issue: http://media.wix.com/ugd/58c8f1_211d0efb4ae842f5aba2e2d5b1519d42.pdf  Children can be removed from their innocent natural family and placed in foster homes and care placements in which they actually do suffer abuse.

I am sick of the tired phrase bandied about by social workers and their defenders “damned if you do and damned if you don’t”.  It simply isn’t true.  Failings resulting in child deaths, such as Victoria Climbie and Baby P are a result of the culture in social services of preferring to target decent, innocent families to fill up their caseloads with, rather than undertake challenging work with families where there may be violence, drug abuse, alcoholism and as Dr Speight says, “they’d rather sit drinking a cup of tea with a nice family than get chased off an estate by someone with a rottweiler”.

“Emotional abuse” seems to be the ‘in thing’ with social services, families are being wrongly broken up, scarring the children and parents for life.  Some families fortunately get their children back: http://www.mirror.co.uk/news/uk-news/council-unlawfully-took-autistic-teenager-4368205 but there must be many who don’t.  Secret courts and judges accepting biased and dishonest, cherry-picked and misrepresentative professional evidence without question, ensures that for many, there is no justice.

It’s not only about the moral panic prevalent within the UK, it’s about lack of understanding and corrupt professionals.  There must be no place in our society for such people to hold support roles.  Social workers do lie, I have direct experience of it.  They rest easy in the knowledge that they are untouchable, such that they have no compunction about doing so even when independent witnesses can verify they have lied.  It’s abuse of power and misfeasance in public office, not to mention contravention of the Data Protection Act 1998 and in some cases, breach of the Equality Act 2010.

Today I read an article: http://www.bbc.co.uk/news/education-29459303 “Disabled Childrens’ Behaviour Deteriorates at School”.  When the child is high-functioning autistic, they may restrain their distress about school whilst there and release it at home where they feel safe to do so, females in particular.  This means that professionals assume that because the behaviour is happening at home, the problematic environment is in the home.  Yet, contradictorily, if the child acts out at school, they also assume the problem comes from the home environment.

When parents ask for their child to be assessed for autism, oftentimes the professionals they encounter will send them on parenting courses and look at their parenting instead of just getting on and assessing the child for autism or other issues so that they know what they are working with from the start.  This not only ensures delays to a child getting support and prolonged stress on the family, but wastes public resources.

The UK is supposedly a democratic society, a society where justice prevails and families are supported to stay together.  Instead, punitive control, misuse of power and abuse of human rights seem to be taking control steadily.  We must fight this, not become complacent, not wait until it happens to you, before you stand up and speak out.  So I’ll re-use a quote I have used before:

“The greater the power, the more dangerous the abuse”.

Just Brimming with Stimming! (An Expert’s Guide for the Layperson)

Stimming “Stimming”, “stims” – or stereotypies as they are correctly known, are a variety of habits which people on the autistic spectrum indulge in.  It’s more than a habit that an NT would have, it’s like a compulsion, and it can increase at times of stress and also at times of excitement or happiness.

Stims range from twirling one’s hair, fiddling with an object, to noises and whole body movements.  Often the more severely on the spectrum someone is, the more obvious their stimming will be.  The higher-functioning among us will often hide our stims, we are well aware “other people” don’t do it, we are busy masking and trying to fit in, so many of us will do our stims in the privacy of our own homes, like some shameful secret.

Wouldn’t it be nice, if we could stim all over the place without anyone minding!  However, it’s hard enough “pretending to be normal” in the words of Liane Holliday-Willey, without drawing additional attention to ourselves.  Some stims might be small enough to do in public without anyone noticing, in which case, lucky person!  I think if you need to stim, holding it all in until you get home might result in the necessity for a long stimming session (ooer missus!) to regain one’s equilibrium.  Jokes aside, stims really can be satisfying, like a refreshing cup of tea, or changing into your comfy PJs.  For me, my stims (which are pretty unobtrusive as stims go, but some of them would still be noticed by others all the same) are a way of releasing stress, but also they are part of me, I need to do them just like I need to blink or yawn, and I do them when I am relaxed also.  The stim I have had for the longest, since childhood, I thought everyone did until I got bigger and started noticing they didn’t and then learned to hide it.

Stims are fine, so long as they don’t (1) involve injury to anyone or are (2) out of keeping with manners and propriety.  Therefore it’s strange that we should feel the need to hide them, but people can be cruel and mean, and target people who show differences.  Difference means you aren’t part of the tribe, you might be a threat, at the very least, you are weak and a potential object of ridicule.

Do all autistic people stim?  No.  My youngest child doesn’t appear to stim whatsoever, although she does twirl her hair round her fingers sometimes, something she used to do a lot as a toddler, but gradually grew out of.  My other child stims, but she also doesn’t do it much in front of people, even the family.  I wonder whether stimming has a connection to the OCD behaviours many autistics have, because coincidentally, myself and my child that stims, both have OCD behaviours.   OCD is a compulsion, and apparently there are brain differences in people with OCD too, so maybe there is a connection.  Although, as I have posted earlier in my blog, there could well be a difference between OCD in autism and OCD in non-autistic people, so that could get confusing.

Parents and teachers and other responsible adults should not try to stop stimming in an autistic child, providing they meet (1) and (2) above.  To do so will place stress on the child and it’s about their needs not yours.  Don’t feel you need to be embarrassed if your child stims when you are out and about.  As you will know as a parent of an autistic child, there are already enough reasons you have learned not to meet the eyes of people staring when your child is behaving atypically compared to NT children.  If you can survive a meltdown from your child, you can survive a stim!

So there you have it, that explains stims, for all those who were curious or just felt like absorbing some information you didn’t already know.

Thought for the day…

Good habits formed at youth make all the difference.

~ Aristotle

CAMHS and autism: A story in pictures…

They say a picture speaks a thousand words, so this post will be telling a story in pictures…

THE CLAIM…

useless at job (CAMHS) 5useless at job (CAMHS) 6

 

AND THE REALITY…

useless at job (CAMHS)useless at job (CAMHS) 3useless at job (CAMHS) 2useless at job (CAMHS) 4waiting list incompetence incompetence 2CBToverpaid This is a story of thousands of children on the autistic spectrum, not getting their needs met, by a service that is unfit for purpose.  The NAS website has documents entitled “You Need To Know…” regarding evidence on this problem, as reported by thousands of parents UK-wide.

The UK Government is undertaking a Parliamentary Select Committee review on this national disgrace that is CAMHS: http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/inquiries/parliament-2010/cmh-2014/

Thought for the day (and  this one is directed at CAMHS):

Your Job

The “square peg into a round hole” mentality and it’s value to autistics

square peg round hole

There seems to be an overwhelming desire in all areas of life, to make people with autism fit into a neuro-typical (NT) way of being.  Apparently it’s better for us to be like NTs.  It applies to how we are socialised, educated, and how as adults, we work.  There is an all-pervading view, that autistic children must be exposed as much as possible, to the same levels of socialising as their NT peers, to make them like it and get used to it – and because “it’s good for them”.  NT parents don’t always realise, that doing this won’t necessarily help their child and can actually cause much unhappiness and discomfort.  Most parents are only trying to do what they believe is best, but an NT parent can in some cases struggle to be in tune with their child in the way they need.  Sometimes of course, they are working from bad advice from professionals too.  I read on an autism forum, how a parent (who is themselves on the spectrum) tried to expose their autistic daughter to as many sleepovers and socialising events as possible when she was younger and how once the daughter reached young adulthood, it hadn’t done her daughter any favours.  Because as an ASC female she had good masking skills which may have been further honed by her typical life experiences, to the point that she could pass as NT, but suffered internally because she still has the same autistic experience as a person on the spectrum who isn’t good at masking their condition – yet feels pressured to hide her true self.

Many autistic children, having experienced a full day at school, are exhausted and want quiet time, to be alone or to find their own ways to de-stress.  Insisting on putting that child in after school clubs, visiting friends/having friends or relatives round, or going to activities after school, or having sleepovers can overwhelm the child.  Don’t forget they will have been interacting and socialising all day at school, the very thing that is challenging and tiring for them, so it’s perfectly fine if they don’t want to do yet more.  Not all children on the spectrum act out their distress either, the passive autistic can internalise it and end up depressed and self-harming as a way of dealing with their internal state.  They will have endured sensory input all day and are being asked to endure yet more.  An autistic person’s ears can actually feel more sensitive by the evening, be less tolerant of sound, as if they have reached their input limit and need a rest.

Being high-functioning and having good masking skills (as I have posted on my blog before) is actually a curse in many ways.  Because not only does society pressure you to fit in and be “normal” but you pressure yourself too because your intelligence allows you to notice your differences and that level of self-awareness brings inhibitions.  It’s not something you want to do – to go round explaining to all and sundry “Actually I am autistic, so sorry if I don’t act the same way you do, or do anything you might consider odd, just so you know.” to let yourself off the hook to be yourself.  It’s a hard thing to deny your whole being, by acting in a certain way.

Some children and adults with ASC retreat to their room and are content to just sit on the computer for instance, or pursue a special interest alone.  Parents especially, can worry about this and think they must encourage the individual out of their room to participate more in the world.  But sometimes, that is enough for that individual at that time.  Quiet and solitary activities are often the autistic person’s way of sorting out the jumble in their head from their day, and strengthening themselves to carry on for the next one.   It’s valuable time for us.  Many of us live in a very internal world, and solitary activities can allow the space to think through events of the day and make sense of them.  Some spectrumites want to socialise and are upset at their difficulties it’s true, but not all.  It’s wise to ask the person what they want, and if they make it clear they are struggling, then offer support on their terms.  Don’t feel it’s OK to make them like NT peers and force them into things they just don’t want.  Some people on the spectrum are at risk of becoming isolated if they are not supported and encouraged, but that’s a different thing than making someone do things just because it’s your view of what is normal.

I was not diagnosed until I was an adult, I went to mainstream school and was made to do all the things my peers did.  It did not change my coping abilities or limits, whatsoever.  I still struggle in communication, I still often prefer to be indoors alone, I go out and do things on my own terms and usually only when I feel I’ve had enough days indoors, being quiet.  If I start trying to fit too many things in, or pressure myself to keep up with everyone else, I quickly become exhausted and need days to recover afterwards, so it’s counter-productive.

Teaching socialising skills is a positive thing, it is known that early interaction is very beneficial to autistic children, but that still doesn’t mean that the individual will have the desire to interact to the same level as NT peers.  Sometimes, you need to let someone just “be”.  Listen to the quiet voice of what they are telling you.  It’s better to help provide the skills the person needs, but also understand they have a choice and can be very instinctive about what their own needs are.  Meltdowns are a child’s (or adult’s) way of communicating that they are in a situation that is too much for them or they have reached their limits.  So do listen to those meltdowns.  Perhaps it’s not that you are doing the wrong things for that child, but that you are just going about them the wrong way.

Mainstream schools sadly, educate autistic children in a way that means making them comply as much as possible to NT styles.  It doesn’t necessarily work for autistic children.  It’s not about making children on the spectrum “fit for society”, it’s time adjustments were made in society to allow autistics to be accepted on their own terms.  We are at least 1% of the population and rising.  In the US autism rates are now 1 in 50  and the UK rates are likely higher than is officially recorded because the NHS is very slow to diagnose females and seems to have set the bar too high, as in many cases they are failing to diagnose people (citing “autistic traits but not enough for a diagnosis”).  So as such a large minority, ought society not be adapting to us?  They put wheelchair ramps and disabled toilets in for physically disabled people, induction loops for the deaf and crossings have textured paving for the blind and partially sighted.  What about us?  It’s discriminatory to believe that an invisible disability is less deserving of accommodations and the law says we are entitled to them in many instances – but we need it across the board.

I have just returned from taking my eldest daughter to a medical appointment.  I told them she was autistic and they could see she was anxious.  When she had to have x-rays she started asking a lot of questions, clearly needing reassurance – which I was giving her, but the radiologist started getting snappy and saying “well I’m not going to force anyone and I have someone else to see” instead of recognising that she just needed to answer a series of questions my daughter needed to ask, to be reassured.  Where was that small accommodation?  She clearly didn’t understand autism and expected my daughter to be like an NT child and attributed her need for reassurance to her not being prepared to undergo the x-rays – in which case she wouldn’t bother.

I want to be me.  I don’t want to be a cultivated and exhausting version of me that suits everyone else.  I don’t want to be something I’m not and fear judgment and derision by society for being different.  That’s what all autistic people want.  We don’t want to hide behind a mask.  We will always be square pegs, so start making some square holes for us because as you can see from the picture above, when you force a square peg into a round hole, we end up broken.

(And just imagine, if rates of autism keep growing, NTs could end up in the minority – and who will be asking for adjustments then?)

Thought for the day:

be-the-change

 

Autism Unawareness

Lesser_hedgehog_tenrec_Echinops_telfairi Meet the “hedgehog” tenrec, which isn’t a hedgehog and is more closely related to the elephant.  It lives on Madagascan islands, where there are no hedgehogs – and if you saw a tenrec, your first reaction would be to think that it was indeed a hedgehog.  The tenrec is one of many examples the world over, of convergent evolution.  There are also a variety of creatures that evolve to mimic other creatures to avoid being eaten, and can naturally be mistaken for the real thing.  You may wonder why this subject is appearing on an autism blog, of all places.  It’s because of the widespread problem people on the autistic spectrum face, in being misdiagnosed and mistaken by health professionals as having mental illnesses.  It isn’t always what it may first appear to be and assumptions are dangerous.

I will give you some examples I have recently faced myself, with my (now ex) GP who had such abysmal lack of autism awareness it beggared belief.  I have always talked rapidly, not necessarily the whole time, but episodically.  It isn’t necessarily a stress reaction, sometimes I just have a lot to say and need to get it out before I forget what it was I was saying.  The perils of verbal communication.  Rapid speech is a known feature in autism.  And yet I was automatically considered mentally ill with severe anxiety with this trait being termed “pressure of speech” being used as justification by this GP.

Likewise, my habit of wearing earplugs on a cord around my neck, to protect my ears in the event of environmental noise due to auditory hypersensitivity (another known sensory issue in autism) this was listed as a reason for some sort of mental health problem.  This GP spent a long time falsely attributing my Asperger’s traits to mental health issues and circulating his opinion within a professional network.  This is a service failing of massive proportions.  Not only did he fail to understand my ASC traits as such, but he refused to provide me simple reasonable adjustments in accessing the surgery, in direct contravention of the Equality Act 2010 and the Health & Social Care Act 2008.  I did my best to educate him, by providing him with links and quotes regarding legal responsibilities on the practice, but it was ignored.  Instead of doing his duty, he falsely recorded details of consultations and misattributed my traits to severe anxiety.  This led to highly inappropriate and unwarranted referrals because he decided that as a parent, this meant my children were at risk, without any cause.

Both my children are on the autistic spectrum.  They are intelligent, extremely loved, very well-parented, clean and healthy children.  I had chosen to home-educate them for a period, before they were diagnosed as they were unhappy at school and the younger child was not coping there.  On the basis of me home-educating, (with, by my own choice, local authority approved provision) and without asking me any questions regarding how it was going and what we did for socialising opportunities, he jumped to erroneous conclusions, decided I was mentally ill with severe anxiety and whipped up a frenzy in the professional network.  I knew nothing at the time, only finding out much later when he telephoned me and accused me of exaggerating my eldest child’s school difficulties and of causing both children’s anxiety, ignoring documented evidence from my daughter herself and professionals she had reported it to, that it was her school causing her distress.  My eldest child hadn’t yet got her diagnosis, she had recently returned to school and was being bullied there and they were not supporting her anywhere near adequately, they were in fact reducing the level of support she got which was already only lip service.  She was having massive meltdowns every day after school, begging me to to remove her from the place that was causing her such distress.  In over 70% of autistic people, there are additional conditions, with anxiety being one of them.  This GP even asked my daughter herself whether I was causing her anxiety!  She said to me afterwards “It’s not you causing me anxiety, it’s the other way round.” in reference to me dealing with her frequent school-related meltdowns and supporting her.

In the meantime, this GP was calling multi-disciplinary meetings with professionals, again unknown to me at the time, citing potential for emotional harm from me to my daughter, because he was so determined to paint me as a neurotic, mentally ill person.  And bear in mind, that he knew that I had a diagnosis of Asperger’s syndrome.  Her persisted so much with this unprofessional, ill-judged and almost unhinged behaviour, that he was having an effect on other professionals who started to believe him, even with professional evidence available of what my daughter was going through at school being the cause of her difficulties.  The stress and trouble he caused for our family was enormous.  All because he was unaware about autism, and couldn’t think any differently from what his neurotypical, blinkered, text book mentality told him.  And all the time he was continuing this way, he delayed my child getting the right support because he had everyone barking up the wrong tree as to the cause of her difficulties.  Everything I was saying, was proven to be true because my daughter was telling clinical professionals what a terrible time she was having at school, and still I got no apology.

I subsequently found out he had made false recording on my health records when I got copies, and lied about his accusations against me.  He had even made false accusations against me of “hounding” him that he circulated to a network of professionals, because I sent him 2 emails on his NHS email address – which I checked with NHS PALS was OK to use and that it was secure.  I believe he had some sort of personality disorder to behave the way he did, which coupled with his autism unawareness was a recipe for disaster.  The shame and further injustice of it is, that I reported him to the regulatory bodies that ought to take action, and they refused – citing his “opinion” was not something they could challenge!  Never mind the lies he told, false recording he did and unprofessional comments to other professionals about me or his actions delaying my daughter receiving the right support.  And he has withheld some copies of records for the spurious reasons relating to his false interpretations of Asperger’s traits and trumped up safeguarding claims, because of his already disproven emotional harm accusations.

So you see, autism awareness isn’t just about people out there not knowing what autism means, when it’s professionals that have the power to wreak havoc on families and actually cause the very thing they are mistakenly attributing your autistic traits to – anxiety – it’s about huge injustices and abuse of power and something has to be done about this.  So my thought for the day is this:

the-greater-the-power-the-more-dangerous-the and I’ll throw this in for good measure: “Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” ~ Isaac Asimov

Professionals Not Understanding Autistic Presentations – Masking

Masks

There is such a lot of professional ignorance about autism out there.  Well, I do muse to myself that it could just be in the UK.  We apparently have rates of 1 in 100, but in the US latest figures are 1 in 68.  That tells us that either the Americans are over-diagnosing/have higher rates for some reason – or that the UK is under-diagnosing.  My own thoughts are that the cash-strapped NHS has a directive to only diagnose the most severe cases of autism.  Severity is likely judged by things such as whether the child is disrupting the class at school.  When a child is quiet and compliant at school, their support needs get ignored.  Sadly, this is the case even when parents are reporting their child’s distress and extreme behaviours in great detail and family life is greatly impacted by the fallout of supporting an undiagnosed child.

If you look at the NHS NICE Guidelines for Autism Diagnosis in Children & Young People it says:

http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

1.2.5 When considering the possibility of autism, be aware that:

  • signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
  • when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment

1.2.7 Do not rule out autism because of:

  • difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

The point being, that school (whilst not necessarily “supportive”) can be a routine and structure that enables an autistic child to function with few apparent difficulties.  That doesn’t mean they are not there.  Mental health can greatly suffer if the condition is not recognised and supported.

In the American DSM (which some clinicians in the UK use), it says:

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

“Diagnostic Criteria for 299.00 Autism Spectrum Disorder

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

  1. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

So at school, the demands may not have exceeded the child’s capacities, that doesn’t make them not autistic or not entitled to diagnosis.  Many high-functioning ASC children are highly anxious and are so inhibited at school and trying so desperately to fit in, they manage to subdue their behaviour, but this is like a volcano awaiting eruption and once they get home, where they feel safe, they release their anxiety and stress.

Professionals seem to be very keen to blame parenting and fob parents off with parenting courses which of course, won’t make any difference to the autistic child, whether this is deliberate and part of the directive not to diagnose as many as possible, or whether they truly believe there are that many failed parents out there, I will leave you to judge.  They seem to struggle to understand that autism is a spectrum, and that traits vary in their strength and manifestation between individuals.  Because some traits seem more subtle, they are telling parents “some autistic behaviours but not enough for a diagnosis” which is outrageous.

Professionals accusing parents of being the cause of their autistic child’s behaviour is wrong on so many levels.  The environment a behaviour is present in, doesn’t automatically mean that this is the environment causing the behaviour.  So I will leave this message to all those professionals out there, that seemingly cannot think outside of their box, do not understand autism and work in a culture of blame:

Edited to add this research: http://www.tandfonline.com/doi/abs/10.1080/08856257.2014.986915#aHR0cDovL3d3dy50YW5kZm9ubGluZS5jb20vZG9pL3BkZi8xMC4xMDgwLzA4ODU2MjU3LjIwMTQuOTg2OTE1QEBAMA==

“Abstract

This article presents the findings of ethnographic case studies of three girls on the autistic spectrum attending mainstream primary schools and illustrates the difficulties they experience and the ways in which these are often unrecognised. The observations of the girls and subsequent individual interviews with their mothers, class teachers, SENCO’s and ultimately themselves, reveal the personal adjustments the girls make in response to the hidden curriculum and the ways in which these go unnoticed, effectively masking their need for support, and contributing to their underachievement in school. The research also identifies a misunderstanding of autism in girls by some teachers that contributes to a lack of support for their needs, despite their diagnosis. Teachers need to understand how autistic girls present, and how they learn, if they are to recognise the need to illuminate the hidden curriculum. The implications of these findings are that without this awareness autistic girls in mainstream settings are also at risk of limited access to the known curriculum and of social isolation.”

Assume

Another autism poem…

illegal aliens

Illegal Aliens

They know not us, we are other, us alone

Separate, different, alien, unknown

Judging by rules made for the masses of same

Thinking in their boxes, like a runaway train

The army is building, the new breed it has come

This world of wrongness will become, undone

Like the fly in the ointment, we exist we are real

Ignoring us easily, like it’s no big deal

Huddling together against our kind

You live in the chains of your minds

Despite how hard it is struggling through

I’d rather be like me, than be like you

Pretending to be one of you, to merge

Whilst inside, I feel myself want to surge

Societies that are blind, crumble in the end

Let us show you the way, let us, you mend

When Services Go Bad…Autism Misunderstood

autism ignoranceThe word “service”, conjures up images of people bending over backwards to help, people asking what it is you need, what they can do for you.  And yet, across the UK (and no doubt other countries), autism families are coming up against obstruction, tardiness, lack of awareness and misunderstanding from these services.  The National Autistic Society has produced reports on how parents complain of the failings of CAMHS to support and understand their autistic children (click here to access their “You Need to Know” report).  Largely, this is a result of clinical staff lacking training in autism and the day-to-day issues it raises and comparing of autistic children to neurotypical children (although there also seems to be an arrogance and refusal to accept their lack of expertise too).  This doesn’t work.  A neurotypical child may have anxiety and depression because of particular triggers or events, but an autistic child likely has it because of the struggle to exist in a world that fails to understand, provide adjustments and support them.  What remedies work for a neurotypical child may not for an autistic child.

Then there are social services.  The name seems almost a misnomer, a Google will bring up multiple horror stories about people’s experiences of them, and this likely intensifies with autism families, because social services staff – even in supposedly specialist disability social services departments, just don’t get the training and have a mindset that doesn’t recognise or support autism and it’s challenges.  It’s about ticking boxes, a culture of looking for blame and cause – often directed at parents, and judging an autistic child (never mind an autistic parent) by neurotypical standards.  They fail to understand not only the autistic character, but the family dynamics and needs.  This issue has resulted in organisations being started up purely to address this problem, by determined and dedicated parents.  One such website is Parents Protecting Children run by Jan Loxley-Blount.  Autistic children (and their families) do need protecting, but what professionals seem to forget, is that their ham-fisted and uneducated dealings can cause the very thing they are supposedly protecting against and which they increasingly seem to be falsely accusing parents of – emotional harm.  An amazing blog by Sue Gerrard (hat off to Sue) goes into great detail about the problems with professional approaches in misunderstanding autism.  Sue is not only a parent to an autistic child but she is trained as a biologist, psychologist and primary teacher and I am a huge fan of her blog.  I recently attended a safeguarding workshop and was horrified at the attitude of one professional attending, who stated that parents were asking for autism assessment of their children just to get state benefits.  The suspicion and nastiness in the comment was vile.  You can’t ever be on a level playing field if they start out with that viewpoint.  The excellently researched scenario acted out at the workshop, showed a family struggling against obstructive services, and who were misunderstood at every turn.  A child suffered an accident, which it was never explained the specifics of, and which the autistic child spoke plainly, without embellishment of, leading to professional assumptions being made without checking – which were automatically directed against the parents and resulted in the parents being prevented from taking their children home.  Not once, shamefully, did a single professional in the workshop identify that the assumption was made to blame the parents, or that in this scenario it was the professionals that the children actually needed protecting from.  Does this sound like a service?  In my view social services needs entirely overhauling and transparency and accountability for their actions needs putting in place, that’s just for any family but for autism families a whole layer of specific training needs to be added.

Even schools, who surely should have good understanding of autism – not only in supporting autistic children struggling in mainstream education but also in assisting in the identification of potentially autistic children.  Some parents will never have heard of autism or have the vaguest ideas of it, with stereotypical views.  So faced with a child with challenging behaviour, especially where they are masking their behaviour at school and offloading it onto parents at home, they may need support in recognising the validity of getting their child assessed – teachers have a role to play.

In the UK, the zero autism awareness of most GPs is now recognised as such a problem, that finally the Department of Health recognised and are addressing the problem.  But these things take time, and in the meantime, parents going to their GPs for help are getting fobbed off, misled and failed by GPs, who are supposed to be referring a child for autism assessment.  When it comes to adults approaching GPs, most of them aren’t even aware of the Autism Act 2009 and the Autism Strategy, making it a legal right for an adult with ASC concerns to get referred for assessment.  So you have to ask, how many undiagnosed children and adults are struggling along without a diagnosis.  My younger child was diagnosed pretty straightforwardly (albeit with a lot of pushing due to waiting lists) but my eldest child suffered the incompetence of our local CAMHS who failed to identify her high-functioning presentation and we had to go for a second opinion.  She has Asperger’s, but the second clinicians did not do a new assessment, they relied on the flawed information from CAMHS and did no clinical testing, so she came out with a diagnosis of PDD-Other (for which no clinical description exists anywhere!) which does not recognise the severity of her traits and is not the correct diagnosis.  Who knows if this will cause her to receive less support than she should do, already one professional has refused to believe it is a diagnosis of autism.  As for myself, state diagnostic services failed me too and I was diagnosed privately (and much more thoroughly than via state assessment).

I sometimes wish people could get inside my brain, it’s like screaming at a wall trying to get understanding and awareness from others, but when it’s professionals, you kind of assume the awareness and understanding will already be there.  They are qualified and trained right?  Wrong!  Until the Government makes a stand, ensures that all relevant professionals receive a minimum amount of autism training, clinicians are really tuned in to the nature of the spectrum, clinical staff keep abreast of research and developments, and the state puts out public service adverts on radio and TV to raise public awareness and spends some money on addressing this issue, autistic people and their families will continue to face brick walls – which ironically in the end means they are likely to cost these services more.  And don’t forget, those autistic children are the autistic adults of tomorrow.  I won’t even go into adult autism services, as they are virtually non-existent.  Quote of the day:

“Without intervention today, the cost of care for adults with autism will be significantly greater and the burden will no longer lie with the parents, but on our entire society.”

~ Jenny McCarthy

Edited to add 15.5.16: new Planet Autism web page about the false accusations and discrimination against autism families (the scale of the issue is huge): http://evolutian.wix.com/planetautism#!discrimination-against-autism-families/n103x

OCD or not OCD…That is the Question!

OCD mugOCD behaviours in autism are a subject of debate.  Are they a co-morbid condition, or an integral feature of the autistic condition for many with autism?  Interesting research states the following:

http://apt.rcpsych.org/content/7/4/310.full

“Obsessive compulsive disorders (DSM-IV)
The core features of obsessive–compulsive disorder (OCD) are recurrent and persistent thoughts, impulses or images that are experienced at some time during the disturbance as intrusive and inappropriate and that cause marked anxiety or distress. The individual recognises that these are a product of his or her own mind. Compulsions involve repetitive behaviours or mental acts that a person feels driven to perform to reduce stress associated with some dreaded event or situation. An adult can recognise that they are excessive or unreasonable, but children cannot (American Psychiatric Association, 1994).

These phenomena, including the urge to count and manipulate numbers, to repeat the same action over and over, are similar to the repetitive routines associated with Asperger syndrome. Individuals with both conditions display ritualistic behaviour and resistance to change. Where they differ is that persons with Asperger syndrome have obsessive interests that are not experienced as ego-dystonic and, indeed, are often enjoyed. Baron-Cohen (1989) was critical of the use of the term obsession in persons with autism because the subjective phenomena of resistance to repetitive activities could not be discerned in autism. He suggested instead the phrase ‘repetitive activities’. OCD generally has a much later onset and lacks the poor social emotional reciprocity, empathy problems and social skills difficulties of people with Asperger syndrome (Szatmari, 1998). Detailed analysis of current symptoms and an early developmental history are the key to making a correct diagnosis.

Clearly, the differentiation of Asperger disorder from other conditions is complex because of the many possibilities for misdiagnosis. The key to correct diagnosis is a precise early developmental history, with a systematic discussion of all the criteria set out for Asperger syndrome (Wing, 1981; Gillberg, 1991) or Asperger disorder (American Psychiatric Association, 1994). Assessment instruments such as the ADI–R may be useful in establishing diagnosis. A multi-disciplinary team approach is critical, and diagnosis from a solely neurological, speech and language or educational point of view must cease if families are to be spared confused partial diagnoses.”

Clearly, it’s highly questionable that OCD should be considered a separate diagnosis that is in addition to the ASC diagnosis, so is it actually a trait that is a core feature in a significant amount of individuals with ASC.  Especially so, when you consider that true OCD, usually starts later, than OCD behaviours in autism may present:

http://www.ocduk.org/ocd

“OCD affects males and females equally, and on average begins to affect people during late adolescence for men and during their early twenties for women.”

Therefore, children who show OCD behaviours younger than this, who are in fact on the autistic spectrum, should be evaluated with extra care during their ASC assessment so that OCD traits do not deflect from their ASC traits and they end up misdiagnosed.  Clinicians need to have full training and awareness of the existence and frequence of OCD behaviours in autism.

I definitely have OCD behaviours, I colour-match clothes pegs, I go back and re-check I have locked the front door even when I know I did lock it, I have to do it every time, and I am compelled to check that I didn’t leave my bag or belongings behind when I get up to leave somewhere.  When I was a teenager I used to have to step on certain parts of paving stones as I walked.  None of this is about me feeling something bad will happen if I don’t do it, it is a compulsion which no doubt is about control.  As an Aspie, life is chaotic and confusing, so somewhere in my brain, I clearly need to control my environment as much as possible.  It doesn’t rule my life, but it does affect it, because probably if someone tried to force me not to carry out my checks and organising, I might start heading for a meltdown!

Hoarding is a known type of OCD, but then collecting things is common on the autistic spectrum so where does one start and the other end?  Females are often known to like collecting handbags and shoes for instance.  I do this, but to quite an extreme.  I have many handbags that I have matching shoes for, all of which are neatly stored in stacked shoe containers, and most of which have never been worn.  I like these things, I want them, I feel compelled to get them, but then I don’t use them.  Likewise, I collect beauty gadgets (I sometimes think I own enough that I could set up my own beauty business with them!)  and many never get used and are surplus to requirements.  I also have a strange fascination with cleaning implements such as vacuum cleaners.  I don’t understand why.  I am always behind with housework so it’s not as if I am an OCD cleaning-freak.  I read about the features of vacuum cleaners and get a thrill when I see a new vacuum cleaner product, I’m currently very interested in robot vacuums!  These fascinations, which can develop into special interests could look like OCD behaviours, but merge into autism spectrum behaviours.

New edit: This piece of research questions whether there is a “putative OCD-autistic disorder, which should be studied in greater detail.” http://www.ncbi.nlm.nih.gov/pubmed/12587149

New edit: This research identifies that OCD and autism share genetic roots and “people with autism are twice as likely to receive a diagnosis of OCD and people with OCD are four times as likely to also have autism”  https://spectrumnews.org/news/sweeping-study-underscores-autisms-overlap-with-obsessions/

 

Thought for the day:

Normal-OCD_2

Making Sense of Sensory Issues

Sensory OverloadSensory issues are often a core feature of autism spectrum conditions.  There are two types: hypersensitivity (extreme sensitivity) and hyposensitivity (lacking sensitivity).  This post is about hypersensitivity.  I have multiple sensory problems, I guess, they wouldn’t be problems if I didn’t encounter the things that trigger them, but life involves sensory input so that would be impossible.

Auditory sensitivity means that sounds almost assault your ears when they are above a certain level, or are of a certain pitch.  It quickly gets very stressful, and it can be exacerbated by tiredness, illness or stress.  Overwhelming levels of noise can lead to meltdown, and will in many children, adults would normally try to remove themselves from the situation or perhaps invoke “stimming” (self-stimulatory habits officially called stereotypies) to diffuse the stress.

If a noise is too loud for me, afterwards I can get a reaction in my ears that sounds almost like a muted thumping and it is unpleasant.  Whilst uncomfortable noise levels are going on, it can feel almost painful to my ears.  I can’t bear so many things that others think is mad, such as someone crunching food in the same room as me, someone blowing their nose or sniffing, someone noisily picking at their fingernails etc., although those aren’t necessarily disturbing in volume, it’s just their presence that distresses my ears.  My hearing is so sensitive that I can even hear sonic insect repellents that are supposed to be above human range.

Tactile hypersensitivity, known as exteroception is an irritant.  Clothing can feel very uncomfortable and annoying, labels feel itchy, waistbands can make you feel panicky even. I feel the tiniest single hair or miniscule insect land or fall on me and  I can’t bear even one tendril of hair brushing against my face.  I also can’t bear the feeling of a sock getting rucked up under my toes…and I used to think everybody felt the same as me.  I just thought it was life’s annoying things.  Since knowing which of my traits are autistic I have identified so much that I thought everybody had, and realised they don’t.

Interoception, is an awareness of internal organs.  This is a little known one.  Many times when I have had health complaints I have felt something that was wrong inside my body and when it was checked out, I was correct.  When carrying both my children, I felt them moving incredibly early and the radiographer conducting the scan told me when I mentioned it that “it isn’t possible”.  I beg to differ as I felt it!  When your body is that sensitive you know what is and isn’t part of your body.

Optical sensitivity, light and bright colours hurt my eyes.  I often wear sunglasses even on cloudy days and almost always have the sun visor down no matter how dull the day (yes, Aspies can drive!).  Fluorescent colours make my eyeballs literally ache and I really pick up on lightbulb flicker.  It’s hard to explain it to someone who doesn’t have it.  I also meet all the criteria for scotopic sensitivity http://www.irlen.org.uk/ (also known as Meares Irlen Syndrome – how many syndromes can one person have!) which is where you have night-blindness, are affected by glare from artificial lights and certain coloured backgrounds with text are harder to read, amongst other things.

Smell sensitivity, known as olfactory hypersensitivity is a difficult one.  Bad smells can easily make me violently dry heave and I can smell things long before others can and when others can’t at all.

Food textures – I can’t bear stringy food, slimy food, gloopy food, food with little bits in (I can gag extremely easily over textures) and am frequently seen pulling bits and pieces out of my mouth when eating.  If I see a tubey vein in a piece of meat, well that’s it for me!  Sorry for the descriptive element, but it does help get the picture.

My equilibrioception, which is vestibular, or balance sense, is poor, I have never learned to ride a bike and doubt I could manage it even now.  Coupled with my proprioception problems (see next paragraph) it makes for one clumsy person!

My proprioception, which is someone’s sense of body in space, is bad, I am the clumsiest person ever.  I constantly walk into door frames etc. burn my arms on the iron and oven, bruise myself (I’m so used to it I barely notice it and wonder where all the bruises come from).

So as you can see, it’s a pretty long list.  For an autistic child going through all these sensations, you can understand why they can meltdown pretty quickly when their sense are assaulted by all these things.  This is also why people on the spectrum need time out to recover when things have been overstimulating.  It can build up as well, you are being overloaded throughout the day without even sometimes realising it, and then you suddenly reach a point that it’s all been too much, until you feel like this:

Sensory Overload 2 So, with that, I leave you with another quote:

Jane Wagner

“Reality is the leading cause of stress amongst those in touch with it.”
Jane Wagner

A poem I wrote once about being on the spectrum…and early diagnosis

NAS poster(poster I designed, displayed at NAS Autism & Participation Conference 28th January 2014)

Autism from the inside view

When you see life through your own set of glasses
When your soul exists worlds apart
Your senses too keen, fragile and shattered
Confusion, is merely the start

***

The world assaults you from all sides
Why are others not also the same
Why are you different, why do you not fit
Why is it you, that others blame

***

You feel like a snail needing it’s shell
You feel like everything’s wrong
People don’t make sense to you
So you sing the saddest song

***

Your anger may rise, your fear overwhelm
Your tears fall unrecognised
Where is the world that for you would be home
Where is that place, that yourself would be prized

***

Hiding away becomes easy, when understanding is none
Encounters with others a trial
Your words feel like those from a foreign shore
And you feel from others such bile

***

You want order and control in this world of chaos
You want others to accept and be aware
But we are the minority in this place
And the majority don’t seem to care

OK, it speaks of the more negative outlook I know, it’s not all doom and gloom, but this is the reality for many people on the spectrum, and this is why it’s so important that early identification and diagnosis is provided for people, because as the following link shows, outcomes for adults who receive late diagnoses are poor: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome and http://www.shu.ac.uk/faculties/ds/education/theautismcentre/docs/ASPECT%20Consultancy%20report.pdf.