Ehlers-Danlos syndrome and autism

Cortical Chauvinism

This is one in a series of blogs where I discuss different conditions manifesting autstic symptomatology of known origin or neuropathology (so-called syndromic autism). The first of these blogs was on tuberous sclerosis (http://bit.ly/17ExHYt ). The emphasis in all of these blogs is in the commonality of abnormalities in certain parts of the brain.  It is my belief that in autism there is a common lesion that interferes in some way with the division of germinal cells early during brain development. The end result is abnormalities in cell migration and malformed areas of the cerebral cortex and brainstem. You can find additional information about this process at:  http://bit.ly/1aM5KFu and http://bit.ly/136db0t In this blog I discuss the Ehlers-Danlos syndrome and some commonalities to idiopathic autism primarily in terms of brain pathology.

The Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect the connective tissues of the body. As the name…

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Autism and Deprivation of Liberty: The Shocking Tale of What the State is Doing

Deprivation of Liberty The Government created an Autism Act in 2009 for adults on the autistic spectrum.  Then it created an adults Autism Strategy (ironically entitled “Leading Fulfilling and Rewarding Lives”) in 2010, to remind authorities that there was an Autism Act and that they were meant to be adhering to it – just spelling it out sort of thing.  When people kept on reporting that things still weren’t being done as they were supposed to, despite the Act and the Strategy, the Government next created their “Think Autism” Strategy in 2014 just to remind them again (just how dense can these people be!).  What is all this achieving?  The Government can hold it’s hands up and say, “Look, we made a law for you, we did our bit, look how seriously we are taking this.”  …We all know what the term ‘lip service’ means though.

Some autistic adults are getting deflected when they seek referral for assessment via their GP, some are misdiagnosed in mental health services and pumped full of medication and then some that do get assessed for ASC are told “not enough traits for a diagnosis”.  You see, organisations love loopholes: loopholes let you avoid putting your hand in your pocket.  High-functioning adults don’t usually get any support even when they are diagnosed (and those that do, it’s not obtained without a fight).  Whereas lower-functioning autistic adults that may be unable to learn self-care, may be non-verbal, may have challenging behaviours and other difficulties, are much likelier to get interventions, but have something else to fear: the state taking over their lives totally.  The Autism Act is meant to protect and ensure the rights of all autistic adults, no matter their level of functioning – so that’s two big fails right there.  The Autism Strategy (backed up by statutory NHS NICE Guidelines) also states that all autistic adults must be provided with an ‘autism care pathway’.  This can include health professionals, housing, social care and any other discipline that needs to be involved.  After all, the Government created the Leading Fulfilling and Rewarding Lives Strategy specifically for autistic adults – and that means irrespective of their level of functioning.  How did we get to the options being pretty much, either zero support or total removal of control?  What does removal of control actually mean?  It means deprivation of liberty.  How is it in this day and age, in a supposedly cultured 21st century society, we are locking away autistic adults?

Misuse of the Mental Capacity Act 2005 (MCA) is prevalent, festering away under the surface of this supposedly enlightened society, with it’s legislation and laws.  There is a Code of Practice for the MCA, but like the Autism Act and the Autism Strategy, no-one is listening.  Who is policing this?  Nobody of course.  Corruption exists in the state, we all know that, it’s a very harsh fact of life – shouldn’t happen but it does.  But when vulnerable people are having their lives destroyed, people have to rise up against it.  The House of Lords has found that DoLs are being abused and the MCA is unfit for purpose, in March of this year.  Here are just a small handful of representative stories where autistic adults have been, or are due to be, deprived of their liberty:

It’s interesting that the following article states:

http://www.theguardian.com/society/2014/aug/05/councils-struggle-deprivation-liberty-tenfold-rise-mentally-vulnerable-patients

“Local authorities are struggling to cope with a tenfold increase in assessments of mentally vulnerable patients when hospitals or care homes want to deprive them of their liberty. A court ruling in March, increasing the number of patients protected under the Mental Capacity Act deprivation of liberty safeguards (DoLS), has seen assessments soar from just over 10,000 last year, to a predicted 94,000 this year, according to the Association of Directors of Social Services.”

Could this mean the motive is financial rather than the wellbeing of the person?  Of course, it’s not only autistic people this is happening to.  As in my previous blog post on state abuse, people with other invisible disabilities such as CFS/ME and connective tissue disorders such as Ehlers Danlos Syndrome are suffering this outcome too.  It’s almost undoubtedly happening to people with challenging behaviour, learning disabilities and mental health conditions which are being mismanaged by the state, resulting in difficulties for the individual which are more expeditious for the state to deal with that way.  Conditions that are not understood, or are fobbed off as ‘all in the mind’ or the fault of parents, are misrepresented as psychiatric conditions upon which the state will act as they see fit, often irrespective of evidence and facts to the contrary.  The system has a rotten core, or at the very least, is being manipulated for their own purposes by those who work within it.  But the system as it exists, closes down complaints, different regulatory organisations state “we do not investigate individual cases”, so where is recourse for people fighting for the rights of their loved ones?  If you are the parent of an autistic child who needs ongoing support and care, when that child reaches 18 you currently have no rights whatsoever.  The NAS will attest to this fact: http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future/parents-of-adults-with-autism-your-rights.aspx

The trouble lies further with the secret courts, judges can be persuaded with cherry-picked and misrepresentative evidence, presented by local authorities.  Local authorities can pay psychiatrists to say what they need them to say.  I don’t pretend to know the whole shebang, but just what I have found out in the last few weeks, including the story of Isobel Moss (first link above) in the last couple of days, tells me there may well be a gravy train involved.  Anything can be got round by claiming that it is “not in the best interests” of the individual (the term ‘wide discretionary powers’ springs to mind here), incorrect professional opinions will go unchallenged and social services can manipulate and lie regarding parenting of the individual to make a case for the person to be deprived of their liberty.  This often means parental contact will be prevented.  So then who acts in the individual’s best interests or ensures that those interests are being upheld on a continued basis?  The parent has no say in whether their child is medicated and the health impact of side-effects of any medication unattended to, institutional abuse can be blamed on self-harm and that person is reduced to a shadow of what they could have been, with the right interventions and support (again, see Isobel Moss’s story).   Autism can bring challenging behaviour, but this doesn’t mean someone is mentally ill or lacking capacity.  Their behaviour could be due to illness, pain or sensory issues – and dare I say it, unhappiness in the environment the state has put them in.  So the state’s usual answer is to drug them up some more to make them compliant.  Quite apart from lives destroyed, deaths have occurred because of state interventions, so this cannot get any more serious:

When you know that vulnerable people are suffering this sort of abuse in care homes, you know how urgent it is that this injustice stops immediately: http://www.dailymail.co.uk/news/article-2793220/more-100-000-abused-carers-year-cases-led-46-deaths.html

The Government must do something about abuse of, and breaking of, those laws which are meant to protect people, not imprison them.  Secret courts need to come out of the shadows and provide transparency.  Gagging orders help no-one except to protect miscarriages of justice from being revealed, authorities that really are acting in the best interests of individuals will have nothing to hide.Gagging OrderAbusing individuals’ rights regarding medication, restraint, forcible removal, forced adoptions, deprivation of liberty, state abuse and the rights of those that care for and love them is wrong, inhumane and has no place in a civilized society.  Everyone has the right to a voice, and for some, that means having someone speak for them, but that someone must be someone that disregards what is the easiest option for others and does not revolve around financial incentives or keeping people in business for the sake of it.   There are people who are considered low-functioning autistic, and in the wrong hands they could have had a different outcome than they were lucky enough to have.  Read the story of Carly Fleischmann, who despite being non-verbal and having behavioural problems is an articulate and intelligent young autistic woman who surprised everyone.  See the video about Carly: http://www.youtube.com/watch?v=34xoYwLNpvw, imagine if she had been viewed as lacking capacity – which she could so easily have been, and been forcibly removed, medicated and deprived of her liberty?

If anyone is in this position with a loved one – whether it be forced adoption (whistleblower ex-SW on that link),  deprivation of liberty or any other form of state abuse, please contact Jan Loxley-Blount of Parents Protecting Children.  Jan along with several organisations and professionals, wrote to the Government (Right Hon David Cameron MP – Prime Minister, Right Hon Nick Clegg MP – Deputy Prime Minister, Right Hon Ed Miliband MP – Leader of HM Opposition, Right Hon Jeremy Hunt MP – Secretary of State for Health , Earl Howe – Parliamentary Under-Secretary of State, Department of Health) on 3rd September 2014, detailing the nature of the issue and calling for a meeting.  Let’s hope this is taken seriously.  You can also contact Isabelle Trowler the UK head SW for children or Lyn Romeo the UK head SW for adults, here: office.ofthechiefsocialworker@education.gsi.gov.ukDr Maggie Atkinson is the children’s commissioner for the UK and can be contacted here: info.request@childrenscommissioner.gsi.gov.uk.  If your loved one has had a deprivation of liberty order, the NAS has a page of information and there is a lot of helpful and relevant information regarding deprivation of liberty on the Alzheimer’s Society page which includes information on reviews of DOL decisions and helpful links.  You can obtain free legal advice about human rights here: http://lawworks.org.uk/?cID=10916  Don’t wait until it becomes too difficult to challenge decisions, usually there is a 12 month limit on complaints and appeals.  And remember…

Speak Out

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”.

Connective Tissue Disorders & Their Correlation to Autism

plasticine man It seems for years that I have had problems with tiredness, from the age of seventeen came the bad lower back pain followed later by the aching knees and variety of other bodily pains.  You can live day-to-day with aches and pains that drag you down, but aren’t yet entirely debilitating enough to seek medical help for, you kind of think everyone probably has this issue.  Of course I did intermittently go to the GP with inexplicable tiredness and exhaustion over the years, sometimes blood tests were done, but they always came back with nothing of concern.  It wasn’t until very recently I found out about a connective tissue disorder known as Ehlers Danlos Syndrome and began researching, that it all started to add up.  I realised I had a huge host of the symptoms, one of which is many problems with the gastro-intestinal tract.

I knew that people with autism often have GI problems, scientists also know it, but no-one has been joining up the dots. Medicine and science often seem to identify symptoms and identify and treat them standalone, which of course never gets to the root of the problem, never finds out what is causing the symptoms, or doesn’t do so in a systemic way and match up seemingly disparate symptoms.  Two days ago, after being yet again entirely failed by the NHS (rheumatology department failing to diagnose me, not to mention the arrogant GP who was dismissive and highly reluctant to refer me in the first place and ensured the rheumatologist treated me with the level of disrespect and dismissiveness many of us have become accustomed to with the NHS), I was privately diagnosed with Ehlers Danlos Syndrome.  Before I received my diagnosis, I had researched the seemingly anecdotal connection between EDS and ASC.  ‘There must be some research out there’, I thought.  My youngest child was already diagnosed as hypermobile by our local OT and I can see clear signs of it in my oldest child, they are both on the autistic spectrum too, both conditions are genetic, so there had to be a connection. Sure enough, although the research seems to be still in its infancy, I found it:

1) “High-functioning autistic disorder with Ehlers-Danlos syndromehttp://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full

2) “Autism and Ehlers Danlos Syndrome” http://www.pubfacts.com/detail/1537777/Autism-and-Ehlers-Danlos-syndrome (download full paper from that link)

Here is another article on the effect of EDS on the brain (which also refers to autism, along with proprioception issues and sensory difficulties):
3) “Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Here is an article which discusses the “Underdiagnosed” condition of EDS :
4) (see 5.5 Psychiatric Features) “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
I have read a lot of anecdotal evidence about families with ASC and EDS – isn’t it time science and medicine properly joined up the dots?  I mean even in the article above (3), they state “Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 so they aren’t actually making a strong enough link, they seem to think the two conditions share the same brain changes but not that they are intertwined in some way and that perhaps EDS is even causative of ASC.  So basically there is an elephant in the room…joining the dots elephant…and no-one is bothering to properly join the dots.

It’s high time that science caught up, if we understand connective tissue disorders we may get to understand autism better and perhaps, genes in common can be identified which could lead to understanding causation. Thought for the day:

“For every effect there is a root cause.  Find and address the root cause rather than try to fix the effect, as there is no end to the latter.”

~ Celestine Chua

Edited 28.5.16 to add:

Two genes which may connect the two conditions are ADAMTS2 and TNXB.  Seen on Pinterest –

Pinterest EDS and ASD genes

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

10 Myths About Autism

myth busting  There is such a lot of ignorance about autism around, I blame the Government for not raising awareness with public service announcements, lack of realistic representations in the media and lack of training for those who need to have the awareness.

Here are some of those myths:

  1. Autistic people have no/severely impaired theory of mind – utter tosh, read this article: http://www.eurekalert.org/pub_releases/2006-02/uow-eqp021606.php;
  2. Autistic people have no empathy – there are several types of empathy: cognitive – being aware/accepting of, the feelings and views of others, affective – also known as sympathy, are two of those types and whilst we may have some impairment in cognitive empathy we most definitely have sympathy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494975/;
  3. Autistic people do not have feelings/show affection – we may show them differently at times, but I can assure you we most definitely have them and and whilst some people on the spectrum dislike hugs for sensory reasons, many of us are very huggable on our own terms;
  4. Autistic people do not love – we can love intensely, see the Intense World Theory of autism to see how we may actually experience the world more deeply than NTs https://medium.com/matter-archive/the-boy-whose-brain-could-unlock-autism-70c3d64ff221 and some spectrumites even have a person as the object of their special interest (we’re not talking stalkers here!):
  5. Autistic people do not get married or have families – where do you think all the autistic children are coming from! Many have autistic parents and it is largely a genetic/epigenetic condition, what is clear is that divorce rates can be high among ASC/NT marriages but then they are high in the general population too;
  6. Autistic people are violent – we are no more violent than anyone else, meltdowns are a state of overwhelmedness not aggression or violence and like everyone else, we are also a product of our upbringing, environment and life experiences, do not confuse us with sociopaths and psychopaths.  In fact, people on the spectrum are more likely to fall victim to violence than the average person.  (There can be co-morbid conditions such as ADHD which can make an autistic child especially, tending towards aggression but autism itself does not cause violent tendencies);
  7. Autistic people are mostly male – my belief is that the real ratio is actually 1:1. Because diagnostic criteria were researched and written on males, they do not take into account female presentation of the condition and therefore many females have failed to get diagnosed.   Slowly awareness is rising (although still not anywhere near good enough) and diagnoses of females are increasing, with clinics such as the UK Lorna Wing Centre currently estimating the ratio at 2.5:1 even though the official UK statistics are often quoted at their lowest, at 4:1;
  8. Autistic people all have learning disabilities/low IQ – even at the lowest functioning end of the spectrum, whilst the individual can appear to be locked into their own world and non-verbal, they can still be intelligent (look up Carly Fleischmann). To have an Asperger’s diagnosis you must have an IQ of >70 and they don’t call Asperger’s the geek syndrome for nothing – but that doesn’t mean we are all savants either, pro rata I would guess that people with AS/HFA number as overall more intelligent than the average population of NTs;
  9. Autistic people cannot hide their condition – at the higher functioning end, many of us (especially females) mask our condition – at great expense to ourselves. In fact, it is the higher-functioning autistics that end up with the most risk of anxiety and depression out of all autistic people, due to self-awareness and feeling forced to fit in with society and not getting any support for their condition;
  10. Autism is a mental illness – this is utterly false, it is a neurodevelopmental/neurobehavioural condition, in which the brain is wired slightly differently. It is not a mental illness and it’s a shame that assessment and diagnosis of the condition usually falls under the mental health services umbrella because this perpetuates the myth. In mental health services, people encounter psychiatrists and psychologists who may legally be qualified to assess and diagnose ASC, but are often not experienced or well-trained in it and therefore many adults end up wrongly in the mental health system, misdiagnosed and wrongly medicated, which sadly can in itself produce mental ill-health as a result.

So, Jeremy Hunt, MP and Secretary of State for Health – when are you going to start doing something about the lack of autism awareness?

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 Truth ~ a poem

Image  It’s a place of confusion, this world around
Not “getting” others, commonly found
Feeling misunderstood and not knowing why
Not seeing others eye-to-eye

Like an alien being, lost in their midst
Feeling communication stutter and twist
Telling the truth, such hostility abounds
They want lies and cover-ups to do the rounds

How strangely they judge from a mistaken stance
No capacity for any face value acceptance
You can’t be for real, or are mentally defective
Because they cannot see, your honest perspective

These games they play, like tricks and deceit
Is par for their course, is no big feat
What is it you want, or what can they get
Can’t they see, this is so wrong yet

In my mind I have a different place
I can retreat to when, I can’t take the pace
It’s a spiritual plane, evolved and knowing
Whilst all around this mad world is blowing

There is wrongness out there in all its forms
I will never, to their ways conform
There’s a purpose to this, a meaning to come
One day all the wrongness will be undone

Females with Autism – The Tragedy of Ignorance

girl-on-path  It’s been known about for a while now, but still nothing is done about it.  The diagnostic criteria for autism were all researched on only males with the condition.  So why, we must ask, bearing in mind the recent revision of the DSM, did they not revise those criteria with this evidence in mind?  The ICD is also currently under revision, no doubt the WHO will ignore this glaring anomaly too.  Autism isn’t the only condition in which females present differently.  To my surprise, recent research showed me that this is the case with ADD/ADHD and bipolar too (but then of course they are genetically related to autism).  They say “it’s a man’s world” and in many ways it still is.  Females are suppressed, ignored and mistreated in religion, culture, employment, so it’s not too much of a stretch to point out the misogyny present in the medical profession too.  You can’t be autistic – you are a girl, just a hysterical/neurotic woman, mindset.

The NAS has information on autism in females, and research is out there highlighting that females are more able to mask their difficulties, more likely to be compliant, less likely to act out in the way males do, as well as having better compensatory abilities and yet so many females still struggle to get diagnosed with autism due to the stereotypical beliefs that prevail among clinicians.  So many autistic females are misdiagnosed too, with disorders such as anorexia (anorexia rates are higher in autistic females so clearly the cause of anorexia is not being looked at adequately), BPD and generalised/social anxiety.  Some research claims that females are genetically protected from autism and that this is why the rates are at least 4:1 for males to females.  I dispute this, I personally believe there is no difference in the rates of autism between males and females, it’s just recognition that is the issue.  In this research, it states: “Instead of focusing on specific male risk factors, our focus needs to change to understanding how the male and female brain differ and what that means for autism risk,” and “A lot of what we do in research and intervention are things we have learned from researching boys, and this needs to be addressed,” says Ami Klin, chief of autism and related disorders at the Marcus Autism Center at Emory University in Atlanta, Georgia. He points out that girls are often excluded from studies.  There is also an interesting article in the SEN magazine here.

Here is a media article about how girls with autism are being failed and the gender bias that exists.  So why, when there is so much evidence out there of this problem, are autistic girls being ignored?  As a female parent on the autistic spectrum myself, with two autistic daughters, two of us faced much difficulty in obtaining diagnosis.  The clinical expertise is just not there, and it astounds me that UK clinicians are not kept up-to-date with latest developments in autism research.

Girls are diagnosed later than boys when they do get diagnosed, often meaning years of struggling in the school system without support for their difficulties.  The later you are diagnosed the more likely you are to suffer mental health difficulties.  Females are so much less likely to be referred for assessment: http://www.examiner.com/article/girls-with-asd-suffering-silence “Although there has been a dramatic increase in the number of children diagnosed with autism spectrum disorders (ASD) over the past decade, statistics indicate that boys are being referred and identified in far greater numbers than girls (Attwood, 2006; Wagner, 2006). In fact, referrals for evaluation of boys are approximately ten times higher than for girls (Attwood, 2006).”

I wonder, how many times someone who suspects they are autistic, is assessed and not diagnosed (assuming correct diagnostic outcome).  I would imagine the numbers are infinitesimally small.  So would females be asking to be assessed without reason?  I was once asked, having said I felt different from other people, how would I know that.  That’s the weirdest question.  You can’t really explain something like that you just know, from watching and listening to others, their views, experiences, interactions etc. that you are not like them.

The biggest problem for many autistic females is that they internalise their difficulties, they are passive.  In the education system this means they are model pupils, they don’t disrupt the class and just fade into the background, so no problem – right?  This is why so many autistic girls end up with anxiety, depression, anorexia, self-harming, school phobia.  The more years you go undiagnosed, the harder it gets.  By the time a girl hits secondary school the social expectations soar and the concurrent decline in their ability to cope becomes greater.  Primary school is relatively easy.  If your daughter doesn’t have a close clique of friends it’s easier to disguise as they are all running around playing randomly at that age, friendships can be fickle.  But in secondary school, the playing subsides and it’s all hanging together in gangs gossiping and bantering, and someone with autism finds that extremely difficult, so their differences are highlighted meaning they become a target for bullies.

Lorna Wing described sub-types of Asperger’s: active-but-odd, passive, aloof and stilted.  I once did a poll of Asperger’s females on a forum and so many said they fit the passive* sub-type.  This would lead to the logical conclusion that there are many undiagnosed females out there.  If the parent doesn’t realise their child’s traits could be autism and the school doesn’t pick up on it (parents often rely on schools to point out where their child is having difficulties and advise regarding referrals and interventions) then the child misses getting diagnosed.  Boys on the spectrum will often be more aggressive and schools will then want something done about the disruption of their classes.

So why did the DSM ignore this issue?  It’s bad enough that they removed Asperger’s as a diagnosis – even Autism Speaks published a study declaring that Asperger’s is a distinct form of autism, so overall more people will struggle to get diagnosed with ASC, but as females are already at a great disadvantage in having their condition recognised, this is compounded and the problem will not get resolved unless action is taken over the diagnostic criteria and training of clinicians.  There are countries outside of the USA that use the DSM, including sometimes in the UK.  The ironic thing is, that females with autism pass on the genetics to their children (I know others outside of my own family) and research has also identified the womb environment as contributing to autism, and yet females are tragically ignored.

Edited to add this link to fabulous paper which puts it so well: Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience

Thought for the day:

Image

*Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Lost in Translation…Tales of The Language and Expression of Autism as an Alien Concept

ImageThe Rorschach inkblot test is a great illustrator of the point here.  A random inkblot can be interpreted in different ways by different people, and based on what they see, a psychologist or psychiatrist can use that information towards diagnosing psychopathology.

So there are two points – the first is, that the same thing can be interpreted in different ways by different people, and the second, is that depending on a person’s life experience, training (or lack thereof), environment or upbringing and all sorts of other reasons, they can have a bias to see things a particular way.  Hence the making of assumptions, often incorrect in the case of the autistic people they are assuming about.

I have my own experiences both as an adult with Asperger’s and as a parent of autistic children, of miscommunication and misunderstanding with neurotypical people.  And it cuts both ways.

I feel sure that many parents of autistic children out there, can give testimony to their child saying, (or in the throes of anxiety or meltdown) screaming out, things that would be so likely to be misinterpreted by others, particularly others who don’t know the context or the child’s condition.  Only today, I also read of a worried mother whose autistic child had gone into school and made false accusations against her father of getting her up in the middle of the night to “beat her up” and then laughingly told the parents later on “I lied to see if you get taken away” and the mother is heartbroken.  Clearly the issues here in this particular child, and no doubt others, are low emotional maturity/awareness, low empathy, normal-high intellect and communication deficits – which can be a perfect storm for things getting either taken the wrong way or the child not realising the impact of their words or actions because of autism.  My own younger child (aged 9) has said awful things to me, in a calm and cool voice, because I won a game of snakes and ladders against her.  Later on, she will say she didn’t mean it, but that she was angry.  You would never have known she was angry by the way she said it and the delay after the game finished, before she said it.  It was meant to hurt me, because she was angry, but she had also clearly ruminated about losing the game and thought about what she could say to hurt me.

Once, we undertook a family outing to a play centre, my youngest child got stressed inside the soft play area and had a meltdown, I tried my best to calm her down but she couldn’t stop (it’s a runaway train a lot of the time) and in the end I had to take her by the hand and outside to the car.  All the toddlers in the centre were staring open-mouthed, at this older child screaming, like one of them having a tantrum – times ten.  Whilst taking her across the car park, she was screaming “Help!  You’re taking me away!” and I could see people looking wondering whether I was abducting someone else’s child.

There have been many times the children have both yelled things out at home which I cringe at, because I am acutely aware that to a neighbour through the walls, the meaning will sound totally other than what it actually is.  And bearing in mind that many autistic children are hypersensitive and hyper-reactive to small things, the frequency of screams and tears and yelling of misconstruable things, can be a big concern for a family.

Because autistic children often say things in a factual way, without explaining further, this is another cause for other people to misunderstand and jump to conclusions without looking deeper or enquiring further.  Being misunderstood can have all sorts of consequences, the child may not have the insight to realise they are being misunderstood, or what the implications are, and the parents may be the only people who really know the child and their unique way of expressing themselves and what they actually mean.  You cannot raise a child from a baby without picking up what they mean in the way they express themselves, parents of NT children “learn” their children, but parents of autistic children take this to a whole other level.  You know how a mum is often the only person to understand the particular babble of their toddler, which everyone else finds unintelligible, or how the spouse of a motor neurone disease sufferer will know by a twitch or eye movement exactly what they mean?  That times a hundred, and if the parent is on the spectrum themselves, perhaps that times a thousand.

Then there is the issue of atypical presentation of emotions.  Many parents will know of the ‘different behaviour between school and home‘ scenario – sadly even clinicians aren’t fully aware of this and many other professionals cannot grasp it and refuse to accept it is even possible.  This can lead to schools denying a child is having difficulties coping and professionals in turn, accusing parents of either exaggerating or even making up their child’s difficulties.  This can of course have the potentially devastating effect of the child not receiving the support they need, which in turn affects the child’s mental health and services refusing to accept the problem can be a big strain on a family.  I still shudder when I recall recently reading in the comments below a media article on bullying (something many ASC children suffer from) a mother describe how CAMHS’ failure to support her bullied autistic child, led to their suicide.  Rates of bullying of autistic children can be as high as 63% (possibly higher as those are only the reported cases).  If a child is bullied and the school doesn’t address the problem or accept that it even exists, because the child reports it with flat affect so it is not taken seriously, then this shows professionals are not understanding the unique nature of autistic traits and difficulties.

Autistic children may also display “inappropriate” emotions which an uneducated person would not understand.  For instance, laughing whilst feeling distressed, or want to extricate themselves from a situation or environment.  My husband does not see, that if he teases the children and they are laughing, that this might hide the fact that they are not enjoying it – I can see that they might be close to tears and the laughter disguises how they are really feeling.  Or when he has taken them out, to him they can appear to be fine and enjoying the outing, but the moment they return home either one of them (and sometimes both) can throw themselves at me loudly complaining and almost crying about how they didn’t enjoy it.  And it’s complicated by alexithymia causing difficulty understanding and expressing their emotions.  So when a parent, often the mother, can see what is happening with their child, they can have immense difficulty getting professionals and services to recognise it.  They can be accused of being neurotic, anxious, over-protective, controlling and even more serious things, when they try to seek help for their child and explain the difficulties.  Often also, an autistic child will release their distress and feelings with the person and in the place, they feel safest to do so – at home with the mother.  They are masking it in front of others and this is why the training and awareness of services and professionals is essential, as is professionals treating parents with respect and listening to them.

Life is hard enough with autism, or raising autistic children, we don’t need misjudging been thrown on top of that.

I will finish by requoting something I quoted in one of my other posts:

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9/21

“They judge me on the bit they can see and what they are able to see sadly will itself be limited by their own conditioning…” (Lyte)