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Telling your child before formal diagnosis.

NAS88652

My son is 7, autistic but undiagnosed. Diagnosis may be a year or so away.  He is a twin and is in the same class as his very sociable chatty brother.

I want to tell him that he is autistic. He knows that he's different and I think that understanding of autism would support him to understand himself better. To wait until diagnosis by someone who doesn't know him and is unlikely to really know him feels a bit shallow.

Autistic adults- how were you told? What would have helped you to understand?

Parents of autistic children - how did you tell your child? What helped and what didn't?

Any other advice?

Parents

  • I haven't been formally diagnosed but my son has. We told our son we thought he was autistic when we realized that getting a diagnosis might help him get support at school. We had to discuss it with him because we had to initially go to the GP to ask for an assessment so he needed to be happy to go and with what would be discussed.

    What didn't help was the first GP not believing he was autistic and trying to give me parenting advice, but we pursued it until another GP agreed to do a referral. In the end the person who diagnosed him said there was no doubt.

    Also whilst awaiting assessment make sure he is on a list as we lost time because the referral for assessment after an initial meeting with CAMHS went astray.

  • in reply to Homebird

    Thanks for telling me your experience.  The dreaded parenting advice! 

    He is on a referral list for assessment and receives support in school.

    What type of support does your son receive in school?  His teachers told me last year that following diagnosis, he would receive further support but who knows when that will happen!

  • in reply to NAS88652

    My son has an EHCP so there are many things that teachers are asked to do such as breaking down instructions, repeating instructions to the class so he doesn't get singled out. He is going into year 11 next year and has adjustments for exams which include doing them in a room with only a few students, using a Chromebook for some exams, having a reader available and extra time. I believe with a diagnosis possibly but definitely with an EHCP adjustments are possible for SATS.

    Apart from the academic side they have made reasonable adjustments to what uniform he wears.

    With us being in regular touch with the SENCO these things have been possible at Secondary, but unfortunately as Primary didn't accept the possibility of autism diagnosis took longer and wasn't until he reached Secondary.

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  • in reply to NAS88652

    My son has an EHCP so there are many things that teachers are asked to do such as breaking down instructions, repeating instructions to the class so he doesn't get singled out. He is going into year 11 next year and has adjustments for exams which include doing them in a room with only a few students, using a Chromebook for some exams, having a reader available and extra time. I believe with a diagnosis possibly but definitely with an EHCP adjustments are possible for SATS.

    Apart from the academic side they have made reasonable adjustments to what uniform he wears.

    With us being in regular touch with the SENCO these things have been possible at Secondary, but unfortunately as Primary didn't accept the possibility of autism diagnosis took longer and wasn't until he reached Secondary.

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