What is autism? My understanding of it.

What is autism? My understanding of it.

People generally know about or have at least heard of the 'Autism Spectrum' or ASD (Autism Spectrum Disorder) and the rumours, all true, that it is a very broad spectrum ranging from the mild (children who are high functioning and attend mainstream schools or autism units attached to mainstream schools that are like gold dust in the UK I might add), to the severe (children who attend autism specialist schools, also like gold dust, or special education provisions for varying disabilities for the severe and profound), on the other end. Some countries refer to it as an umbrella and they differ in what they include under that umbrella for instance, things like Global Developmental Delay or PDD-NOS that astonishingly translates as Post Developmental Delay- Not Otherwise Specified, and PDA (Pathological Demand Avoidance) are not included under this umbrella in some countries, and nor do some countries include Aspergers Syndrome (high functioning autism).

Confused yet? I actually don't even know where my own autistic son Henry (age 7) is on that spectrum, it's not like professionals draw you a rainbow shape and go, ok, he's about here and mark it with an X. I also don't really know how to answer people when they ask how severe Henry is, and it seems to be the most asked question (just like me, people want to be able to set their expectations and understand how best to react and respond - hooray for www.autismthreads.co.uk products, ah-hem).

In Henry's case, I feel he is really delayed or behind in some areas, in other areas I feel he is super advanced (obviously, I'm his Mum after all) like visual problem solving, and in others he truly is severe, and to top it all off, he has profound sensory issues. Others who have autism may also have ADD and/or ADHD, and physical health issues such as epilepsy and diabetes are relatively common also. And no, whilst we are going down this road, Henry is not Savant (autism speak for genius) in either art, music, maths or IT...yet! Ha ha ha.

I know it makes people feel as though they are at least saying something positive in response to …" my son has autism..." but really, autistic children have as much chance of being savant as neuro-typical/normal children have of being deemed genius i.e. a very, very, very, slim chance indeed. Just thought I'd clear that one up.

 

Henry is non-verbal yet he talks/says words all the time! Huh? Has he ever had a two-way with even as little as a one or two-word exchange with someone, including his parents? Never. He has never even answered a question with a 'yes' or 'no'. Does it make me sad? No. Frustrated, fascinated, concerned, sympathetic, patient but, not sad. I have learned so much about his sensory issues from an Earlybird Plus course I managed to go on for parents with children who have autism and if I remember correctly, there can be sensory seekers and sensory avoiders and I think Henry is both, oh yay! More on this in another blog, or ten.

Henry is also massively impacted by environmental noises: open or closed windows; lights on or off or reflecting on the walls and floors; public loo hand dryers; vacuum cleaners; blenders; sirens; running water, and probably hundreds of others I have yet to become aware of. Argh, it's all so complicated and mad, at the end of the day Henry is just Henry and no two autistic people are the same, although some tend to 'present' in the same way and most struggle with similar social and sensory difficulties.

When asked, I normally say Henry is "very" or "properly" autistic and then sometimes throw in that he is non-verbal or doesn't talk and then, of course, he immediately says something in front of them, no wonder people are confused. 

 

I try not to get too bothered by the use of words such as disability, impairment, disorder etc. For me, autism is essentially difficulty, in varying degrees, with SOCIAL and EMOTIONAL communication, SOCIAL imagination and SOCIAL integration PLUS sensory issues of some kind. Note all the caps words please, madam school teacher here, who knows nothing.

The three social elements are often referred to as the 'Triad of Impairments'. Those who have Aspergers Syndrome have two of the three social difficulties, they do not have the first difficulty i.e. communication and are often early talkers (the social imagination and integration difficulties mean they struggle with social conversation and chit-chat and things like empathy) and they are often gifted/highly intelligent in a certain area or topic of interest. One of the ways autism was described to me and that I like best is this, courtesy of Dr Roby Marcou in Singapore.

 The important thing to note here in the diagram above is that the biggest part of the triangle and therefore the core is the child's own individual and unique personality. This is who they are - their unique and individual personality. The rest is what they have, autism. The 'theory of mind' part refers to what is known as 'mind-blindness' (I loathe this way of saying it) and presents itself in the very literal way people with autism often think and speak. This does not, however, mean they have no feelings or do not understand emotions. And when your mind works in this way just imagine how hard it is to keep up with us and all our social complexities where we so often say what we don't mean and mean what we don't say!

It was explained to me as an example of say taking your children to a restaurant. Most children as young as three or four will just know that going to a restaurant generally means a meal out as in sitting at a table, having food and drinks and lots of talking. For an autistic child every time they go to a restaurant it is as if they are experiencing it for the first time because every restaurant is different and even if it's the same one it can be filled with different things and people and you may all be there for lunch and not supper like last time, or even be seated at a different table or god forbid the menu has changed! I have read a comment before that we see the big picture but autistic people see the detail.

I keep thinking of that famous painting of a picnic type scene by Seurat or someone that we might look at and in a few split seconds realise it's a picnic and summon up all the lovely feelings that go with that and how fun it would be. An autistic person would use those same split seconds to take on every ounce of detail, probably something like numbers, sizes, colours, positions, brushstrokes of every person, animal, object and tree before even contemplating that it was a picnic. And you know what? I think people who have autism see more detail and more beauty, especially in art and nature, than any of us can ever imagine.

Can children who have autism make progress? Yes, absolutely, provided they can cope with/survive in/be happy at school and receive the right levels of support and understanding. We genuinely feel Henry is making progress all the time (not anything that can be ticked off on a national curriculum or even p-scales list), and others I believe will progress to the point of being able to achieve great and unexpected things. Can autistic people make friends? Yes, absolutely, I have seen it in the playground of an autism specific school, truly amazing.

I don't think they need friends in the same way you or I or our children do though. Henry currently has no friends and at home and at school, he is one very happy chappy indeed. Now don't go quoting me on any of this ok, my opinions do not count for much and I am sure some of this is not even 100% accurate, it's just the way I see it in terms of my own child and expressed in the simplest most casual way I know so that others can relate. There must be thousands of books out there on 'what autism is' and I haven't read any, too jolly busy living it!

 

 

 

 

 


1 comment

  • Mkulu

    Beautiful – please Trish, more of the same. Dad

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