Had to complete another report today about our son. It’s amazing given the number of reports we have had to do that they don’t ever seem to get any easier to write. Maybe it’s just me. Anyway today’s report featured some interesting questions

When did you first realise your son or daughter may have autism?

That’s an interesting question as I don’t think we ever had that one eureka moment when we suddenly realised he was on the spectrum. It was more of a drip feed type of realisation. If we are looking for one point then maybe when he was 5 and the first medical professional said that we should start the process of getting an official Aspergers diagnosis. One confusion – when we started the process Aspergers and Autism were listed as separate life long conditions. Now most agencies have dropped the term Aspergers. Son quite likes the idea of having a condition which doesn’t officially exist anymore.

What initial behavioural signs led to your belief that your son or daughter had autism?

Strangely we didn’t have a checklist of symptoms to work from back then. We didn’t have a clue on what we were supposed to look out for. It’s only when you look back that you see the clues. In our case we had several apparently independent clue strands that we should have brought together and bagged under a heading ‘potential Aspergers’.

  • Repeatedly lining toys like cars and animals up in perfectly straight lines
  • Initial slow development of speech
  • But when speech started a sudden extensive vocabulary developed but with underlying problems with pronunciation
  • Flapping hands when excited or laughing
  • Not able to sit still
  • Fixation on specific objects or toys
  • Delayed walking and crawling
  • Excessive clumsiness – that might be my genes….
  • Refusal to wear socks and shorts

But what confused things was that up to the age of 4 he had no problems with making eye contact. Plus he had many many friends. He loved playing in groups. He did have sensory issues relating to his hearing but they were being examined as a specific ear issue. He has never shown any sign of a lack of empathy.

It was only from the age of 5 that his symptoms seemed to heighten and suddenly combined with becoming completely withdrawn from the rest of the class. Rather than being in the thick of play he would stand completely by himself. Additionally his specific ear issues were ruled out and the focus moved to looking at sensory overload. Yes he started to fall behind at school but that was probably the initial impact of dyslexia.

How well do you feel the education service has supported your son or daughter?

They only left 3 lines to answer this question. I asked our son and he said that 3 lines is more than enough to write ‘PANTS‘. So that is exactly what I wrote. I suspect I might go back to this and elaborate a little more but part of me hopes that I stick with the original response. Says it all really.

54 thoughts on “Says it all really”

  1. Declan was diagnosed before I saw autism. Which is why I had such a hard time with it. But one day, I was calling his name – and right next to his head – he didn’t “hear” me. I started crying. I suddenly realized all the things the professionals were telling me were true. It would be hard for me to do the same thing you are having to do now too because I see so much more than I ever did. And I realize that professionals that don’t want to see autism excuse those quirky behaviors we see now so well. PANTS is great – says it all.

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    1. That must have been so frightening and awful for you. That would have destroyed me. In a strange sort of way my partner saw the Aspergers before me but I probably accepted it quicker. Maybe because deep down I see a lot of the Aspergers traits in me. Take care. xx

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  2. It’s always something at the back of one’s mind that this condition might exist in one’s child. But you really don’t want it to, because it makes life harder for the child.

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  4. My granddaughter had ‘severe learning disabilities’ and they didn’t give the diagnosis until she was 9 or 10. Even though she had most of your list, and a bunch of others. Didn’t want to pay for help for her. My daughter and I were paying for it.

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    2. Providing evidence for a declaration of SEN has always been difficult for schools, The Sencos and teachers have to jump through hoops, therefore I sympathise with anyone attempting this in today’s financial climate. You have my sympathy with this struggle.

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  9. Love the Musk Thistle pic. (at least i think it’s a Musk Thistle, certainly a member of the Carduus genus anyways?) 🙂

    One thing i did learn from doing exams was to really read the question:

    PANTS would be perfect to describe how you FEEL about ‘How well has the education ‘system’ (if you can call that debacle a ‘system’??) has supported your son (or daughter!), but i suspect ‘the examiner’ is more wanting to know how well the level of ‘assistance’ (see as above for ‘system’) provided to your son (or daughter!) has met or failed to meet, his (/her) needs and expectations.

    Of course, this all presumes that your answer is going to be given any consideration by anyone at all who could possibly do something to improve the system, assuming there was ever going to be enough government funds to actually do that.

    Which there probably won’t. 😦

    Did i mention i really like the Thistle pic??

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  13. You are far more patient than I, for I used to always just write “See prior year’s paperwork”. You should have seen me last year when they wanted me to waive my son’s right to vote! I wrote with a Sharpie in big block letters, “NO WAY, JOSE!” Sometimes it’s fun just to give ’em a bit of grief! 😉

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  14. Love the answer Pants as it sums it up so well. My son was diagnosed aged 5 but is now 17 and doing amazing and is applying for an English Lit degree despite being 6 years behind in reading at aged 10. Keep seeing past his diagnosis and seeing his potential. ❤

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  15. Congrats on starting the diagnosis process! I remember it was a relief for me to finally know what was going on. It felt really isolating to grow up not knowing why I was different, and it’s great that your kid will never have to experience that. 🙂

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      1. Yes, it should. I think some specialists drag their feet around it, like it’s the end of the world or something. Autism isn’t the worst thing that can happen to somebody, and an earlier diagnosis means you can get support sooner.

        My diagnosis was a huge relief and it was frustrating for me when other people were slow to take me seriously.

        I hope it gets easier for you.

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  16. Things are always easier to see looking back. The things you listed, I could say I know someone else whose child did some of those things and they aren’t on the spectrum. It seems the same thing happens with other children where they seem like they are developing just fine and then wham-o, not fine. Our nephew is on the spectrum and before 4/5, he was very interactive. Then, started wandering off by himself at family functions. He’s the same age as my daughter, 23. He’s super sweet!! Gives the best hugs!

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  17. Oh, the paperwork. Gotta admit, I know I’ll be starting a slew of the stufff as the next school year starts. Just thankful the principal of the boys’ school, now having two years’ experience with them, is very eager getting meetings with teachers set up and developing plans to support both the boys and their teachers.
    Once the boys enter 3rd grade (around age9) it’ll be a new school building and principal, though, and that worries me. The sooner I can develop a solid paper plan with the therapist and current teachers, I’m hoping the future principal will be willing to work with us.
    Hope you’re well. xxxxxx

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    1. Yes the new school and head is a risk. Hasn’t gone well for us but that’s probably down to all the schools following government priorities. But it’s also a chance to some game changing stuff in place. The good paper plan does help to focus minds on the important stuff. Hanging in there which is a start. xxxxxx

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