Wednesday, 15 January 2020

Is my child autistic?

My autistic son

I remember the exact moment when I thought Anthony might be different. When he wasn't doing something that all the other kids in the antenatal mums group were doing.  I had my suspicions and was soon asking myself, is my child autistic?

How can I find out?  How can I help them?  Did I want to wait to find out?

No.

I've written posts like this before, because there is always a wait that is too long.   Another article, this time in the Guardian yesterday, reported that almost half of parents whose children have been referred for an autism assessment have to wait at least 18 months or more for a formal diagnosis, according to a survey by the charity Ambitious about Autism.

If you are caught in this limbo with your child, here are some things I can point to.

Firstly, you don't need a diagnosis to get help for your child at school.  See your school SENCO as a first point of call.  You do not need a diagnosis for an Education, Health and Care Plan (EHCP) either - these are based in needs.  I've got more information on them here.

Secondly, there are many organisations you can talk to if you don't have a diagnosis but have had an assessment or are suspected of being autistic.  Ambitious About Autism offer a downloadable guide to autism in the early years and the National Autistic Society list the main signs of autism in children and what your rights are diagnosis.  They also have local branches will talk to you and support you in this.  I know it an be a worrying time and organisations like Skylarks  and other parents are invaluable.

I believe however, that getting a diagnosis was essential for our boys.  Both were diagnosed with ASD (Autism Spectrum Disorder) aged four years old.

Without this diagnosis I believe:
  1. David would be in the wrong school (as his school requires an ASD diagnosis for admission)
  2. David would not have learned sign language or PECS David may not communicate at all
  3. David would not be able to play near other children
  4. David would hit and hurt people
  5. David would not be potty trained
  6. David would not sleep unless exhausted
  7. David would scream and cry a lot
  8. Anthony would be struggling at school
  9. Anthony would be considered naughty, would consider himself naughty, a constant failure
  10. Anthony would be frightened of himself and others
  11. Anthony would not know how to swim or ride a bike
  12. Anthony would be angry all the time
  13. Anthony would feel like a failure
  14. I would feel like a bad mother
  15. I would fear my boys
  16. I would feel isolated
  17. We would not be able to go on family days out
  18. We would not be able to leave the children with other adult
18 points for each of the 18 months many are having to wait.  Thankfully I did not have to wait this long.  I did experience the next part of the survey results though. About 70% of those survey complained they were not offered adequate support after diagnosis, while a number reported being left without a follow-up appointment or additional information about support groups.

At the end of our diagnosis meeting - during which the word 'autism' was used for the first time by the assessing health practitioners -  I was handed leaflets.  A few were from autism charities above and one was for the local charity called Skylarks. I cannot express how important the diagnosis and these organisations have been for our lives and mental well-being.  The NHS support was another wait.

Finally, the only other thing I can say is that diagnosis or not, your child is still the same gorgeous child they were before assessment or suspicions.   Support them in whatever way you can, don't worry about getting things wrong (it's going to happen) and love them as you always have.


12 comments:

  1. This is such a helpful post and I totally agree there is help while waiting for a diagnosis. However I think too often parents are left in limbo not knowing if they will get a diagnosis and therefore unsure what they should be doing in the meantime. I agree with your points too I hate to think where we would be had we not got our diagnosis.

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  2. We knew that our son was autistic long before heading down the route of diagnosis, as did the many professionals involved in his care. His neurologist used to ask us on a six monthly basis whether we had had an official diagnosis yet, but, as he was home educated and well supported, we didn't want the stress. We had enough professionals involved due to his other needs. It was only due to a lack of ability within hospitals to make adjustments for him that we ended up getting an official diagnosis. Maybe it was because he was already 8, and things were quite obvious, or because of his other needs, but we had a straightforward and speedy assessment and diagnosis. But no further support afterwards.

    ReplyDelete
    Replies
    1. Yes we knew with both of ours. Our younger one was not only more obvious but with the evidence of siblings being more likely to be affected he was quickly diagnosed.

      Delete
  3. would help you a great deal too take part in research
    my blog.http;//mark-kent.webs.com
    twitter,supersnopper
    Linkedin,AutismDad

    ReplyDelete
  4. Sadly, I have heard of too many schools that have not supported friends' children until they had their official autism diagnosis. I've never really understood this as it would make both the teacher and the child's life so much easier to put in supports as early as possible. #KCACOLS

    ReplyDelete
    Replies
    1. This is so true. There was a news story on how some schools wait for the breakdown before seeking the support to ensure they get funding. Totally the wrong way around, but as with much of the issues we face ultimately down to funding. I'm sure I wrote something about it?

      Delete
    2. Yep -> https://www.rainbowsaretoobeautiful.com/2019/09/its-going-to-take-more-than-golden.html#more

      Delete
  5. Such a helpful post for those parents who feel that they are in limbo. Thank you so much for linking up to #KCACOLS. Hope to see you again next time!

    ReplyDelete
  6. Such a useful post. This will help people to realise what options that they have whilst waiting for a diagnosis. #KCACOLS

    ReplyDelete
  7. i have just become co-Author of a book
    i am chapter,11
    https;//igi-global.com/book/cases-teaching-sexuality-education-individuals/239396
    if you can not get this tell me
    mark

    ReplyDelete
  8. 18 months - what a long wait time for people. Your resources are great though - very handy for anyone in that waiting game. #KCACOLS

    ReplyDelete

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