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Sunday, 30 October 2016

Just What is Autism?


We have learnt that autism is just a description of symptoms, it is not a biological diagnosis.  A biological diagnosis is what you actually need.

I continue to be amazed how loosely this autism description is now applied, to the point that it can become rather trivial.

We have a new assistant working with my son, Monty, at school after lunch.  She has been doing a degree in looking after people with autism, for the last four years, and has done plenty of work experience in special schools. So I suppose she should know what autism means in 2016.  She was really surprised how much Monty can do for himself, how good his handwriting is and what he can do academically at school; she had expected less.  So for her “autism” generally means more severe than my son.

What counts as autism very much depends on where you live, and when.  The more developed the country, the milder the symptoms need to be to warrant an autism diagnosis and in recent times there has been a tendency to diagnose any variance from "normal" as something.  I am not convinced that this is helpful. 

The other day I was reading about the only government-run residential school for girls with autism in the UK.  I was imagining what it must look like.  Girls diagnosed with autism are more rare than boys, but usually have quite severe autism, because for various genetic and other reasons they seem to have a degree of protection, meaning that they need more “hits” in a multiple hit process.  The only girl with autism I have met was non-verbal and had lots of issues.  I met one girl with what was diagnosed in the UK as being Asperger’s, who is highly intelligent but very shy.  She goes to regular school and does just fine; in a rough school no doubt she would be bullied, but nobody would consider her "disabled".

So I was expecting the only government-run residential school for girls with autism to be full of girls with severe autism.  Not at all.  It is seems to full of very highly functional girls and with a Head Teacher who thinks that just as many girls have autism as boys; they are just better at hiding it.

Maybe you can hide some Asperger's, but nobody can hide autism.





       






These girls are convinced they have autism, but have almost nothing in common with the autism exhibited in the special school where we live. Strange.

The way the word autism is now being applied has made it rather meaningless.

All the girls in the video have Asperger’s and so they have all those issues, like being bullied in mainstream school.  I wonder if they ever meet people with what used to be called autism?

Some people with Asperger’s have serious issues, but a lot do not.  The ones with issues can choose to have them treated and some do just that.  A vocal group are adamant that they are just fine the way they are and that the world should adapt to them.

From a therapeutic perspective, the issues faced by people with Asperger's are often very similar, like anxiety, shyness etc. But these issues are different to those faced by people with Autism, so much better to retain the name Asperger's. 

I would go back to the term PDD (Pervasive Developmental Disorder) and then use Autism, Asperger's, ADHD etc as subcategories. Then there would be  a term for adult onset mental disorders (AOMD) like Schizophrenia and Bipolar.  The molecular basis of PDDs and AOMDs are all intertwined and it is the specific molecular basis in each person that matters.

Asperger's means no speech delay, no MR/ID and a very much lower incidence of epilepsy.  As we have seen, Baclofen therapy works very well with most people having Asperger's, but not those with Autism. So Baclofen for the girls at Limpsfield Grange, but not my local special school.

Constantly publicising highly verbal people with “autism”, makes autism appear as a minor quirky issue that you will likely grow out of, rather than a serious medical condition that in many cases can be treated.

You do wonder why there is no government-run residential school for girls with severe autism in the UK?  What are their parents supposed to do?  Is it that people don't want to talk about that kind of autism? and it wouldn't make good TV viewing. 







22 comments:

  1. This is a phone call I know is coming and one I dread. In fact two calls..mum and sis. An interview with Temple Grandin was there in the newspaper and now my mother gets all excited and when I tell her Grandin had aspergers which is different from autism which her grandson has she will get confused and start mixeing up schizophrenia with aspergers and insist temple had autism. And this is a woman with an M.Phil in child psychology. Or they will pick up recovery stories of kids whose autism mainly meant boring people to death by narrating stories they created. Or some old lady will tell me Temple says you have to allow the child to make a choice..farm or staying back at home Temple's mother would firmly ask her. Excuse me Auntie, but my son is still learning to point out at mom and dad with a full prompt..holding his hand, making him stick out his forefinger and speaking a stretched out MOM. Then my biotechnologist sisters favourite stories..autistic kids understand everything and in fact have advanced languages. So basically I am supposed to patiently wait for my son to compose a masterpiece which will put Shakespeare to shame..he will take his own sweet time. Print as well as visual media have contributed a great deal to creating an unrealistic image of autism and the unrelenting hardships that parents go through while raising a child with AUTISM are usually treated as inconvenient truths.

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  2. I think it is a sort of a myth that before the DSM-IV you had to have profound intellectual disability,and poor verbal language to be diagnosed as autistic.For proof of this,you need look no further than some of Leo Kanner's original cases from the 1940s and 1950s,where Kanner describes his interactions with autistic children who were verbal.

    As someone who was diagnosed as autistic as a child,in 1971,and was verbal,I can say I had all kinds of other problems that were no doubt factored into the diagnosis.Severe developmental delays,inability to write,colour with crayons,or draw,inability to catch a ball,head banging,wandering/eloping,being unaware of personal hygiene,and unable to perform basic tasks in this area,and in other areas of day to day living,profound difficulties in learning,but not classic intellectual disability,etc.

    But I could talk good.This may be the way some of the kids Kanner described were.

    Such autism may be what is called "atypical" autism.I understand this is especially common in autism with a metabolic or immune basis.I have made such a remarkable recovery,no one could believe how low functioning I was.Fortunately I do have some documentation of how I was before.

    These videos reminded me of a book I recently learned of called "Asparagus Dreams",that takes place in a school like this for autistic teens,in the UK,in the early 1980s,except it was coeducational.Many,but not all,of the residents in this school are very high functioning,and are diagnosed Asperger's.Here is a review.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542923/

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    1. You are right Roger, what we call Kanner's autism today generally means severe autism, but the subjects Kanner documented were generally higher functioning than this. I think back then even he would not have bothered with boys who were non verbal, non toilet trained and had seizures. We really do need better terminology to describe all these features. I do like Asparagus Syndrome from the book you highlighted.

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    2. How wonderful for parents to have autistic kids who always talked well like Roger or Asperger's 'little professors'. And the recoveries from kids obsessing about dinosaurs or color green.

      But there is a population of autistic kids who are just not..nowhere. They are like absences whom even the very sensitive therapy center I go to does not know what to do with beyond an hour or two. Or the high IQ eighteen year old severely autistic who paces around singing and flinches if my four year old touches him. They also represent autism and are in greater need of medical and other kinds of assistance. A responsible media should give at least some representation to this 'subpopulation' but it will not. Who wants to print an article about a thirteen year old who plays with his saliva and is in diapers and cannot feed himself. These kids and exhist somewhere on the fringes of mainstream society and wait for a time when the meek shall inherit the earth.

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    3. Not necessarily wonderful. My cousin was a high functioning autistic, his family kept his diagnosis hidden. Had completed his MBBS and was in specialist training in anesthesiology. Proficient classical musician, history buff, overall lovely person. Found it profoundly difficult to be around people, create and sustain relationships, severe anxiety. Top student, was encouraged to move from cardiology to anesthesiology because of his lack of people skills. There, he had a review with the Head who again pointed to his shortcomings. Two days later he took his life.

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    4. RG, suicide and indeed some criminal activity are linked to Asperger's driven by feeling that you do not fit in. These are very real issues, but they do not apply to more severe autism. So for the benefit of everyone we should use precise terminology and people should be aware of what risks are associated with each condition.

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    5. Now RG, this is what seems to be the question ..what is autism. A highly talented and intelligent individual with mental depression who takes his own life to a sixteen year old who cannot seek help when left behind in the school bus and life just takes itself away from him.

      Depression, obsession, not fitting in, little awkwardness or just not knowing that you exhist..no self.

      What is autism?

      And yours was a very tragic account. God bless our kids.

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    6. Yes Peter, so very important. I saw what my aunt and uncle went through, such worry and anxiety, and a frustrating inability to help. My aunt would often point to my daughter who had the same diagnosis, and say, "she's happy, she's able to have fun, but he simply is not". My daughter is on the moderate to severe end of the spectrum.

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    7. Our kind of "autism" resembles with RG's relatives and it's absolutely tragic to hear that such a successful person ended his life just like that.
      This is also my daily nightmare.
      As a family we spent much of our lives in a "tragic irony" environment, meaning the events happening on the surface differed radically from what was the actual case.
      My son attended mainstream school and was always excellent with his studies. No interventions were made since we didn't know that he was an Aperger's. To give you an example, there is an incident when he was first grade elementary school that the teacher praised him for proficiency and asked in front of the class "How much did you practise at home?" and my son gave a robot like answer, "I don't know what practise means." All children laughed because they already knew that "practice makes perfect", but my son was an exception to this rule.
      During his school years showed talents in maths, music, foreign languages, geography and the list doesn't end here.
      When he finished school, he entered university exams with very high marks. He studied electrical and computer engineering and finished half school (2.5 out of 5 years) when he became seriously dysfunctional and suicidal.
      Full blown meltdowns occured, with head banging, aggression and property destruction.
      Once, during a meltdown, two different kinds of armed police forces came to our appartment because there was such noise that the neighbours felt life threatened. Fortunately I managed to persuade them that it was an autistic meltdown and didn't let them in. I don't know what would have happened if the police had tried to restrict him.
      Recently my son, after spending days and nights with mathematics, he said " I have to stop...I sometimes think maths makes me "unwordly"." In the beginning I laughed but then I took it seriously. It's like the two sides of the same coin. His talent comes together with his pathology and can't be separated.
      Anyway, I could spend hours describing how weird and unique he is but I can't explain why he comes to deadends.
      This is more or less, just what autism\asperger's..you name it, is in our case.

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    8. Petra,

      Hold on. There has to be a way out. There absolutely has to be something that could help nurture this kind of unique mind.

      Petra, sometimes my son who is 4.10, when looking at videos involving numbers at night, a nighttime ritual, will just rush out and take out his number flash cards or number books and with full concentration, rapidly scan through all of them. He is trying to understand or form some kind of pattern. When other kids his age sleep with teddies, or Spiderman or even cars, my son will keep either alphabet pieces or numbers taken out of the puzzle tray. Numbers and alphabet have discrete, unchanging forms and meanings and then you can control their mpvement to give them a different meaning. This is what he is probably in love with.

      Thank God this is changing, though. He is mostly a happy confident and assertive child who knows his mind and body.

      And please God, spare my son and Petra's son from anxiety and self doubt.


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    9. Petra, sometimes talent is a trap.
      We do something well, and it feels good to be good at something, but then it seems everybody expects us to do that, and do well and forever. If that is not what makes us happy it slowly eats us from the inside. Something everybody tells us we should be proud of makes us miserable.
      Maybe being someone with Aspergers makes it harder to recognize the trap and do something about it. But its a kind of cycle hard for anybody stuck into it.

      Wish the best for you and your son.

      Jane.

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    10. Jane,

      You are so right. The most empowering thing an individual can experience is freeing oneself from others expectations which we unconsciously make our own and reclaiming our right to be ordinary, nonambitious, unexceptional, even stupid.

      It's difficult for neurotypicals..it might be extremely complicated for the atypicals.


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    11. Petra, listen to Jane. If there was a single big mistake we all made in my cousin's case, it was to not only make much of his talents, he enjoyed the praise, but also to drive him to be better, if not the best. Thinking we were helping, we would say things like, " You are going to ace this, you are the best, everybody is going to think you are fantastic", under the misguided impression that we were helping alleviate his anxiety. So, I think he was under huge pressure to compete, whether it was school or music. Any enjoyment that was there was completely overshadowed by severe anxiety and feelings of inadequacy.

      The only thing he really enjoyed was Indian history, and he used to take these trips to India and visit various places of interest. He also enjoyed music whilst there as he could go to some exceptional musicians and discuss and learn from them in a very informal way.

      Unfortunately in my family we are all very stoic and not demonstrative about our affections. I wish and wish that we could have just kept telling him " I love you, I am so glad that you are here with us, we just love having you around. I am so amazed by your brilliance, but the world is too competitive and it ruins everything, so if something is not fun you shouldn't do it".

      I am so deeply disappointed in the psychiatric profession. After more than a century, I see the least progress in this field. They are woefully inadequate at significantly helping with any of the neurological disorders, whether it is autism, bipolar, schizophrenia, etc.

      Petra, I think you are a wonderful mother, such a partner to your son. My aunt and uncle were not able to communicate with him about his difficulties quite as much as you are, so I think he felt much more alone and in despair.

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    12. Kritika, Jane, thank you. I appreciate your comments.
      Best wishes to you.

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    13. Petra, have you tried Ketamine?

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    14. I heard this very interesting TedTalk I think it was on NPR (for those in America) from a pyschologist I think she was (only caught the middle part of the program) talking abput child development. Those who were always told they were excellent at one particular thing and were the best at it and constantly praised etc grew up to have the most anxiety, to be the most miserable and depressed. They became debilitated by being afraid to fail. They would never try anything new for that fear. She called these kids the ones who learned to have a "fixed mindset". Whereas the kids who were just average, never pumped up with excessive praise etc, and a "growth mindset" and were not afraid to experiment and try new things. therefore their emotional health is better. After all - the most important thing.

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    15. Tanya

      Ask me. After slogging for years over science and mathematics and acquiring a doctorate, quitting it all has been the best and the most independent decision of my life. I have felt this mentally strong, happy and worthy never before. Though musings from my family about 'such a waste of talent' leaves me a bit perturbed but only for a short while. In most cases, if the first born on whom the parents invest most, displays an early streak of brightness, god forbid, the child's entire life is appropriated by others. This leaves that child forever having to carry the burden of expectations and often the second born with a complex of not being the best and most valued.

      All kids are special needs kids, I believe but in the context of autism I always try and remind myself to

      1. Try and maintain equanimity and avoid emotional reactions or even undertones when dealing with worrisome behaviour.. attempt firm regulation.

      2. Our observations about kids are only our perceptions and not what our kids really are..avoid defining terms like shy, introvert, unhappy, always bright and happy and the most lethal, 'genius'. I am really bad at this and all the time labelling my child.

      3. How our lives have turned out or directing our lives trajectory is not our child's responsibility. Trying to work out the best developmental trajectory for our child is, however, our responsibility. I am perfect at this.

      I know, all of us are deviating from the topic of this post, but as Tanya states, emotional health is the most important thing.


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  3. IMO: if you can 'hide it' then it’s not autism, because it means 'the something' regarding communication, socialisation and language that is impaired in autism is not impaired in that individual.
    But people have appropriated so much from the term autism that is almost an empty label. Almost like it’s a lifestyle preference instead of a medical condition.
    On the other hand, I feel sorry for these girls, who think they need a psychiatric diagnostic to have the right to be themselves, and require it to have their needs considered by the school system. It should not come to that.
    I attribute the fault to a school system (society?) that went too far regarding people standardisation and labeling.

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  4. Peter,do you believe autism in children now,is more severe than it used to be? I know this is a topic for much debate.

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    1. My hunch is that there are more kids now with severe autism than before. But this is masked by a vast increase in diagnosing very mild autism that has always been present but previously were called odd/weird/quirky/nerdy etc. The statistics are so poor quality we cannot prove anything.

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    2. Peter, in America, I think there are many more that are mild than before. I think one of the great data points is old line pediatricians in small towns who rarely saw autistic children or asperger kids and now it is commonplace in his practice. These are not severe kids he is talking about.

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  5. RG, thank you so much.
    I know how hard you fight for your daughter yourself.
    Ketamine frightens me. With Bumetanide (2 months) plus LD Clonazepam plus Biogaia we have a good stable result.
    I am trying to make an appointment for whole genome sequencing in the university hospital, which costs much less than in private.

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