It had to be done. Due to the popularity of the ‘first episode‘ I thought a follow-up was warranted. Autistic children are suffering across the UK, from missed diagnosis, misdiagnosis and tardy and inept support from CAMHS. So here be it (read it and literally, weep…):
This post is prompted by reading another blogger’s post. As they say, enough is enough – this issue has to be addressed. Let’s look at the main reasons that professionals disbelieve parents seeking diagnostic assessments, or support, for their autistic children:
OK, let’s discuss these point-by-point:
(1) The different behaviour between school and home is the most oft-cited example of this scenario, although of course it isn’t only necessarily ‘home’, it can be socially with friends and relatives too. All children behave differently between school and home. Only with autistic children the difference can be much more marked. In this case, we are of course referring to those children who mask in school, so that teachers do not see the challenging behaviours the family experience, that indicate the child’s autism difficulties.
What teachers need to remember, is that as a rule they have no autism training (at best a short module when training) – hence the Government has finally just put autism training on the agenda for all new teachers. (What happened to giving the existing ones some damned training too eh!) They also need to remember that they are not the expert in that child – their parents are! School is not a natural environment, it’s very artificial to have 30+ children bunched together in a room sitting listening to someone, so why would they expect the child to be their normal relaxed safe self, with all that peer pressure, school rules and expectations upon them?
When it comes to a clinic environment, the child is likely to feel inhibited because usually the clinicians are strangers. The child is likely to know they are there to be tested and observed and even if they are young, it’s an environment they are not used to. (Let’s face it, the diagnostic situation in the UK means it’s very rare for pre-school children to be diagnosed with autism unless they are at the severe end of the spectrum. This country is not good at early intervention sadly.) So in this clinic environment, the child will still not feel relaxed and safe, to behave as their true self.
So the question is why are professionals not understanding this blatantly obvious situation and instead automatically assuming parents are lying/exaggerating, or responsible for the challenging behaviours at home? When is common sense and logic going to prevail?
(2) Sadly, cynical professional attitudes towards parents is a widespread problem. So much so, I produced an information sheet on it: “Professionals/Authority and the Parent Blame Culture” The research evidence bears it out – read that document and your eyes will pop. It’s shocking and unacceptable. While you have professionals assuming parents are all useless idiots who are just seeking benefits, or are responsible for their child’s traits through poor parenting, there will always be a huge barrier to a child being diagnosed or supported. That is a huge failing in their duty of care towards that child. Why should prejudices, bias and outright negligence be allowed to prevent a child obtaining diagnosis and support? Is it any wonder there are so many autistic children suffering in the mental health system? So many autistic children being excluded, or electively home-educated, through school not meeting their needs? This is about the children, not about the professional’s personal views. Blanket attitudes based on a small minority of parents that may behave in negligent or nefarious ways, is idiocy. This also accounts for why autistic children are being misdiagnosed with attachment disorder. Another enlightening fact sheet about that here: “The Overdiagnosis & Misdiagnosis of Attachment Disorder” and a brilliant response in that regard by an Educational Psychologist Dr Hilary Dyer, to a diabolical article on the BPS website, stating that PDA is probably attachment disorder. Parent-blame has to stop!
(3) The autistic child rejecting their diagnosis (or potential diagnosis) is a really tough one, the name for rejecting a diagnosis that has been made is anosognosia and as you are probably starting to expect I might, I wrote something about that too: “Anosognosia and Autism – A Real Concern”
People might say, that if someone doesn’t want a diagnosis of this type of condition (i.e. a non life-threatening one) that they should have some say in this. An adult can make their own decisions in that regard about themselves of course. But when it’s a child and they are struggling and need recognition and support for it, there is no other option. There are many times when parents really do know best and children really don’t know what’s best for them.
As a parent in this position, there are times when there is really no choice. If your child cannot cope in school and school-refuses, professionals are (metaphorically or literally!) rattling at the windows, banging on the doors demanding to know why and unless there is a medical reason, the EWO will be round and the LA will be a-fining! With (2) above, clearly if you cannot evidence a reason for your child’s distress and most especially if (1) is in play, the only option is a diagnosis. All you can do is hope that one day your child will be at peace with it and accept who they are. But the problem is, when your child is highly intelligent and a great masker and mimicker, it can make things very tough for professionals who don’t really know their stuff to see through that. Having had an autistic child say before their assessment “I will act all normally and make them see I’m not autistic!” I can tell you that coupled with an incompetent CAMHS with an entrenched (2) viewpoint, it is far from plain sailing being believed! CAMHS need to understand that some children will be resistant to diagnosis and to possess the expertise to see through that!
(4) Restriction of resources is very common, cut-backs here, there and everywhere. But if someone has a condition they need a diagnosis of it. Because as many times as professionals say support is not tied to diagnosis, us parents know better and I can show you ten-fold (and then some) families who can prove otherwise. The NAS isn’t the only one to report on this:
(NAS page updated to remove comment since screenshot taken! Still available to view here however: http://tweb-cms.autism.org.uk/about/diagnosis/criteria-changes.aspx) Having seen information through a subject access request, where mental health staff discussed not diagnosing people they believed did not need services, I can tell you this is very real. Having also read many stories on parent forums where CAMHS told parents that their child didn’t need a diagnosis because they were managing in school (which could well be because of (1) anyway!), is yet more evidence. Again, shocking. And it’s so damned short-sighted! Unsupported autistics tend to break-down over time, if a child is not diagnosed by reaching secondary age things are likely to really hit the fan soon after. Secondary school is where the social and school demands are greater and differences can become more apparent. Mental health difficulties increase through lack of support and these children end up costing services more in the long run. If they are not diagnosed they will likely receive inappropriate mental health support and no recognition of the underlying cause of their difficulties. It is usually what is behind the ridiculous “Not Enough Traits for a Diagnosis” scenario. Short-term thinking helps no-one!
(5) Lack of expertise in autism is rife in CAMHS. Being legally qualified to assess and diagnose autism does not equal being automatically good at it. The worse they are, the more likely (1) is going to be a barrier to diagnosis. Also (4) probably feeds into (2) because stressed staff are sure to have an onward adverse effect on service users and quality of provision. If the service is not funding staff to have adequate autism-specific training and keeping up-to-date with latest knowledge, how can they claim to have the right expertise? Clinicians should also have the wherewithal to be proactive and take some individual responsibility for working towards their own clinical excellence. What seems to be the modus operandi at CAMHS is a quick training module in administering an ADOS-2 and a totally tick-box approach to assessment. That’s just not good enough. Our children are the future, what sort of future will they be if they suffer diagnostic failure and zero support?
(6) A professional with their own personal issues…yuk, saved until last, but not the least important by any means. Sadly, there are some very unbalanced and even deranged people in professional jobs! And you know what they say, people that distrust others so pathologically, are usually the most untrustworthy (it’s called projection). Professionals with mental ill-health, addictions, prejudices, personality disorders, disastrous upbringings that have made them unbalanced – you name it, they are not any more immune than the rest of the population. In fact rates of addiction are very high among doctors (and check out link no. 2 below, they took the job in the first place and aren’t taking a sabbatical whilst they are unfit to practice!). We’ve probably all encountered more than one doctor with a God complex, or a doctor who dislikes well-informed parents. I guess this aspect is the one that can sometimes be the hardest to do anything about, humans are prone to err. Sometimes people just take a dislike to someone no matter what their role is. If the person who dislikes you is a doctor assessing your child or your child’s teacher, it’s tough. A professional’s word is often seen as sacrosanct and how dare a mere parent challenge it! You can ask for an independent 2nd opinion if you feel diagnostic failure results from a clash with a clinician. There are always complaints processes that exist, even if they often end in a whitewash at least the problem is recorded. Ironically I’ve heard from more than a few parents who have been targeted by professionals after they raised complaints. Hell hath no fury like a professional scorned eh. So cover all your bases and collect evidence of your child’s difficulties.
One of the problems that can arise is being targeted falsely for MSBP/FII and if anything is going to derail a child being diagnosed that will. Collate your evidence, video your child’s behaviours if necessary, document what strategies you have tried and what has worked (especially with PDA strategies) and what has failed. If they push a parenting course, take it but say that whilst you are happy to go on the course if it will help your child, you wish your child concurrently on the waiting list for autism assessment because the Government states that early intervention is necessary and they have a duty of care. If it’s a teacher…you could always ask the school to move your child to another class if it’s possible. But where the issue is that they aren’t supporting the view of autistic behaviours in school for the assessment, school evidence is not the be-all-and-end-all and there is a wealth of official information on (1) out there which will counter that. If the attitude is from an EP, if you can afford it get a private EP assessment as evidence. You can do this for an autism assessment too. There are options, you don’t need to let bad behaviour from a professional be a complete barrier, no matter how difficult and stressful (and unfair on your child) it is. You can also report badly-behaving professionals to bodies such as the GMC, HCPC etc. if they are behaving negligently and/or you have good reason to suspect, or know, any unprofessional behaviour is due to any reason that impacts their functioning. Bodies such as Healthwatch record complaints and patterns of failings. The bottom line is, professionals like that should not be in the job!
…if you don’t believe a professional would behave badly in their job, here is some light reading for you (if the parent blame document wasn’t enough for you!)
So come on professionals ~ get your act together and stop with the disbelieving already! And remember folks…
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.
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…
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:
Being strident and militant, does it help your cause – or damage it?
As an autistic adult, I strongly believe in those of us who can, speaking out to get our voices heard. I believe in us asserting our rights, speaking out against abuses against those like us and fighting for awareness and reasonable adjustments.
Autism by it’s nature, means we can get hyperfocused on issues, we can pursue them determinedly, ignore the status of those which might intimidate others and see the logic behind things that others miss. But there can be a negative side to it too. We can be relentless to the point of concentrating on the aspects we have seized on and ignoring other pertinent information, being so detail focused we don’t see the bigger picture. We can ignore social etiquette to the point that we don’t see we are alienating those we are trying to reach.
There are some in the autism community, who become very angry at people viewing autism as a disability. This is not helped, by those intending to be helpful, coming forward and pointing out the positive qualities of autism, proclaiming autism is only a difference, not a disability. Some autistics therefore are very strident and militant in condemning anyone who recognises the deficits in autism and the disabling nature of many features of it.
Let’s get one thing clear, all forms of autism are classified as a learning difficulty. Not all however, are a learning disability, usually that term applies to those with a low IQ. But the deficits in social imagination, the failure to always understand humour and sarcasm, to understand the intentions of others and the frequent difficulties those classed as “high-functioning” can have with such things as self-care and independence are all learning difficulties. Autism (including Asperger’s syndrome) is a diagnosis that is not made unless you meet the criteria of the symptoms negatively impacting your daily life. Even PDD Other (PDD NOS in the USA) is severely impacting on the lives of those with it. So let’s stop pretending shall we.
Having said that, we have all heard of autistic savants, many autistics have prodigious memories, photographic memories, amazing creative skills and musicality – and many excel at computers and programming. Some autistics are productive members of society – or would be given the right support and reasonable adjustments (although employment rates are notoriously low for those on the spectrum). We cannot however, ignore those who are non-verbal and incredibly disabled by their condition, who will always need supportive care, never be independent and whose parents struggle to support them day-to-day, under immense stress.
Naturally, anyone who speaks out on behalf of autistics is doing so with a good heart and good intentions. But sometimes, the more strident and militant among our community, can stand on their soap boxes and unfairly condemn others. Sometimes those others are parents trying to help their children. Some parents may be misguided, so worried about their child’s difficulties and future that they look for what may amount to ‘cures’ and remedies.
It disappoints me to see autistic campaigners using their anger to rail against those doing their best to support their autistic children. Naming them “abusers” without understanding that they only want the best for their children, is inflammatory and unproductive to the autistic cause. If I saw proof that certain products were harming autistic children, I would be the first to condemn people using them knowing they were harmful. If unknown products are out there, mainstream research needs to test them without bias or financial interests so that mainstream can accept them to reassure the public, or the authorities need to act to make them illegal if proven to harm. People trying to help their children may be duped, they may need educating, but they don’t need condemning. They are worrying who will look after their autistic children when they are no longer around and trying to make their child’s present day-to-day life easier.
I have yet to see evidence that either GcMAF or MMS are harmful. In fact, I have found much convincing information and worldwide research studies about GcMAF and the horror of it being derived from a blood product is unfathomable. The company states that it’s scientists use pristine sterilisation processes and their product is purer than the blood the NHS transfuses into patients on a daily basis. As for MMS, it is apparently chlorine dioxide. Chlorine dioxide is also found in: “…mouthwashes, toothpastes, mouth sprays and as a preservative in eye drops. Citric acid is a naturally occurring, weak organic acid found in a large variety of fruits and vegetables, most notably citrus fruits – lemons and limes. The citric acid in Tristel’s products is used for the acidification of sodium chlorite to generate chlorine dioxide.” http://www.tristel.com/products/healthcare/about-chlorine-dioxide/
The question that remains therefore is whether the concentration being used in MMS is safe (I understand it is used highly diluted before use) and whether it is being used safely. So far, many claims are being made about how dangerous it is, but I have not seen any evidence that this is the case. I am waiting to be convinced, so convince me. Kerri Rivera has a lot of information on her website including this page: http://www.healingthesymptomsknownasautism.com/information-about-chlorine-dioxide/ and also a fact sheet about CD (MMS). Any substance is open to misuse, that doesn’t mean the substance is necessarily dangerous. The mainstream has been known to be untrustworthy in preventing simple remedies being available to the public in favour of pharmaceuticals, which are a money spinner of course, a whole industry is built upon them.
Make your own mind up after researching:
Autistic campaigners against both products, don’t appear to have fully researched them and yet are making wild accusations against them and condemning people who use them in good faith. Apparently reports have also been made to the authorities on these people. Knowing how professionals like social services can often misunderstand and misrepresent autism families, causing immense stress – including to the autistic children, to take such actions without being 100% sure of your facts is very serious and potentially grossly unfair.
Do autistic campaigners who are highly vocal, angry, militant and strident help autistic causes? Not if they are blinded by their personal views on autism as a condition and resulting emotions. Not if they are making themselves unpopular with the very mainstream we need to support us. You don’t get people to listen by being angry and even less so if you are campaigning based on misinformation. Who will take us seriously then? We will be seen as trouble-makers. Do we want these people representing us? We are struggling to get our voices heard as it is, do we want the only voices to come from above the parapet with erroneous claims that may not be based in fact and are based on their own prejudices and ignorance?
I say we need to be questioning, open-minded, check our facts, listen to all sides and speak with a strong, firm voice based on truths. Only then will mainstream organisations be more prepared to listen (or have a harder time saying why not) and will we gain the respect we deserve when we stand on our soap boxes.
Planet Autism Blog 