Life with autistic sons?

My oldest son’s teacher thinks he is, like his brother, ‘on the spectrum’. She has thought this for some time and was the reason why, six months ago, he was referred to a paediatrician. Back then, we took both boys in and actually spent longer talking about him (A) than his brother (B). The doctor concluded that he did not demonstrate traits that were suggestive of autism or aspergers. I remember at the time agreeing that B ‘was a different matter’ and ‘more likely’ to be on the spectrum, as indeed it later transpired he was. But not A. A follow up review was booked as routine.

A’s teacher is pleased with his progress this year but has not really changed her mind, despite what the doctor said. At the last parent’s evening she offered to write down her concerns ahead of his follow up appointment. This week she did just that. Below is what she wrote, word for word, except where I’ve changed the name.

Observed behaviours/ actions of concern

  • A is still finding some difficulties to follow simple instructions straight away, especially when moving from whole class discussion time to individual work at his table. The use of a visual timetable has helped- and the time taken to get settled and start work has increased but this is slower than the rest of the class
  • A doesn’t like loud noises and will cover his ears if unsure. He is less anxious now and doesn’t get so easily distressed.  However he did get very upset and scared a few week when we had a heavy thunder downpour.
  • A is a very able reader and gets very engrossed in the book.  This can often be at the expense of other things that A should be doing.  He will often be looking at his book when he should be lining up or sitting on the carpet.
  • A required constant reassurance, especially when faced unfamiliar with situation.
  • He likes routine and needs to know what and when he is doing things.  Again when routine changes he can get anxious and need reassurance.

Whilst I accept a number of the above characteristics and recognise them as my child, I completely reject the idea that he is on the spectrum. My oldest son is not autistic. He really isn’t. In recent year’s I’ve learnt to trust my judgement on things a little more, like when I knew B actually had broken his collarbone, despite not showing much pain. Or when I knew SEYS were wrong about how quickly to get the statementing process rolling. Such firmness of mind and confidence in my judgement is quite uncharacteristic for me, but I’ve found that I’m getting better at trusting my instincts about things. I think I know my son well. I’m close to him and with my term-time only job get to spend a great deal of time with him. And I’m telling you- he is not autistic. I’m not having it.

I have great respect for A’s teacher (and for primary teachers in general; as a secondary teacher I am always humbled by the job they do). A has really enjoyed Year One with her and has indeed come on leaps and bounds in all aspects of his learning and development. But she’s wrong. Reading what she has written, he sounds like a pain in the arse, but not autistic. I take issue with using his love of reading as a stick to beat him with. So he gets engrossed in a book, to the exclusion of anything else. Isn’t that suppossed to happen? It would be right to say A is a sensitive boy, but again, since when was that a cause for concern? I think it’s a quality. The visual timetable has worked well for him without a doubt. He has a typical boy’s ability for disorganisation and distraction. I’m not blind to his faults, but do these points really add up to a convincing case?

Readers will know that a lot of time and effort has gone into learning about my autistic son’s condition (though not as much as I’d like). I am still at the very start of this learning process but I think I’ve come a long way from being the person who wrote ‘What I know about autism’ all those months ago. I’m not claiming any sort of expertise but I would say that, of the things I’ve learnt, not many of them seem to apply to A. I googled ‘characteristics of aspergers’ and found a list of about 80 characteristics. My wife and I went through them and deleted the ones that did not apply to A. Here are the ones that were left:

  • Strongly like, or strongly dislike certain things, for example, certain foods.
  • Difficulty starting projects.
  • Interrupting in the middle of a conversation.
  • Verbalizing strongly on likes and dislikes.
  • Fixating on really bad or really good experiences.
  • Strong sensitivity to sound, light some tastes, odors and colors.
  • Difficulty in determining time limits.
  • Constantly asking of questions.
  • Very easily distracted.
  • Thinking on a “one track mind” type basis.

Some of these I would take issue with. Sometimes he has a one track mind and he is sensitive to sounds. But they are not his defining characteristics by a long shot. I think you could find 10 features on the list that could apply to any neuro-typical person. This is not aspergers, this is normal.

I am confident that A’s teacher has his best interests at heart. I don’t want to question her professional judgement. Also, she is an experienced teacher and knows her stuff. I do however wonder if his brother’s situation has led her a little too quickly to her ‘suspicions’ as she calls them. Whatever her intentions, I doubt she knows the worry and anxiety this has caused us, particularly over the last week. My wife is struggling with this and is very anxious about the forthcoming appointment. She has said some scary things, such as, “this could push me over the edge”. She has expressed regret about ‘jumping down his throat’ when he does things that could be percieved as evident of aspergers. I’ve done this too. She is also worried about how I am dealing with all this. She knows how I feel about this and is worried what my reaction will be if the paediatrician does not say what I am expecting to hear. Trouble is, she has her own slight suspicions about him and always has.

Okay- time to think objectively. What is really going on here? Is my rock-solid certainty actually just a complete refusal to accept that my son might be autistic? If he was diagnosed, I know it would be a huge blow to me. It’s difficult to articulate how I’d feel. I would be more upset than I was about his brother. Why is that? Does that mean I had already ‘written off’ B to the condition but can’t face ‘losing’ my other son to it? Does it mean that, because B was so much more obviously autistic it was somehow ‘better’? I feel so guilty about writing that.

 The appointment is tomorrow.

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This entry was posted in asd, aspergers, autism and tagged , , . Bookmark the permalink.

2 Responses to Life with autistic sons?

  1. alexcparsons says:

    Bloody hell! Isn’t as though you have enough to deal with!

    This is a brilliant blog post and you have completely nailed it! Stick to your guns. Teacher may be well intentioned, but that doesn’t mean she is right. She may just have to work harder with him than just finding a label that let’s her off the hook.

    You will get the right result by being dispassionate and clear, I am sure.

    Good luck!

  2. I really feel your anguish here. Slightly different to you, but my instinct was telling me that my youngest daughter was exhibiting autistic traits though the school refused to see it and were blaming me for her behaviours. Because the school refused to listen, I kept doubting myself but persisted in having my daughter assessed. I needed to know one way or the other whether she was autistic so that I could give her the best possible support. A few months ago my instincts were proved right and my daughter was diagnosed with Aspergers (her elder brother has ASD which is a lot more obvious). But I ended up going through more turmoil with her diagnosis than her brothers. It took me longer to come to terms with it and I think for a while I was depressed about the whole situation we were in as a family. I’m not sure why – just a feeling about being overwhelmed by having two autistic children and the knowledge that getting support in my area is horrendous. Now a few months later, we’re feeling a bit better as we are coming to terms with being a family with autistic children. Whatever the outcome, I wish you and your family well.

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