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Struggling to get diagnosis

Wife and Mum

Hi, I’m new here so do let me know if I’m doing this wrong!

My son has been exhibiting signs of ASD since he was tiny, nursery said there were no issues, but when pressed agreed there were maladaptive behaviours. Private nursery though, so they didn’t push it. Now he has just started school. They’re saying the same thing, there’s no issue with him, yet his stimming and meltdowns are at an all time high out of school. He’s becoming incredibly difficult to deal with because he is masking and attempting to cope so much in school. 

I’m struggling to get him assessed- Manchester Paeds told us he needs to be on the Social Communication Pathway who won’t accept a self referral without a school report, they won’t do a report as they think he’s completely NT. Rock, meet hard place! Anyone been in the same position or have advice?

Thanks in advance!

Parents
    • Hi. Our son’s first diagnosis failed as school didn’t see a problem. (Very old fashioned head and senco). Basically because he wasn’t rocking in a corner they didn’t accept there was anything wrong.My advice for now is to parent him as if he is autistic as it will help him so much. Tell school what you experience at home. Be patient as they might not know him well enough yet. I’m a TA in reception and we’re just now seeing the children settled enough to begin to show their true selves. If you feel school would be on board, look at some of the things that might stress his day and suggest amendments. Could his peg be on the end of a row, or his drawer in a quieter spot? How does lunch or playtime work for him and what could be better? We had loads of little things in place for E at primary, even without a diagnosis. Like a table outside the hall for lunch, his own desk in the classroom, squidgy cushion for fidgety bottom, extra time for tests. None of this costs the school anything and those little adaptations might help until he’s old enough for a diagnosis to be more certain. Hope this helps 
  • in reply to Pagea

    Thank you Pagea for your response, I had given up hope for any replies, and definitely didn’t expect to get one that made so much sense. School have finally agreed to have a meeting in a  fortnight about his issues, so I’ll be prepping a behaviour diary and looking up possible amendments, some of which are the same as you suggested. So thank you, for not letting me feel alone!

  • in reply to Wife and Mum

    I'm glad I made sense - that's not always the case at this end of the week! You're not alone and it sounds like you are doing lots of sensible things.  A behaviour diary is a really useful thing, especially if you can include possible triggers. You could even try asking for reduced hours if you think that would help as tiredness can be a huge factor. If he's coping with all sorts of sensory and mental stresses, the school day will really wear him out. We have a girl in our class who is moving to half days on Wednesdays and Fridays as she usually loses the plot a bit on these days (we have PE Wednesday mornings which sends her a bit sideways, and by Friday she just wants to cuddle on my lap). Keep remembering that you don't need a diagnosis for any of this. It's just asking for what your son needs to make school a positive experience, and for him not to melt down afterwards.

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  • in reply to Wife and Mum

    I'm glad I made sense - that's not always the case at this end of the week! You're not alone and it sounds like you are doing lots of sensible things.  A behaviour diary is a really useful thing, especially if you can include possible triggers. You could even try asking for reduced hours if you think that would help as tiredness can be a huge factor. If he's coping with all sorts of sensory and mental stresses, the school day will really wear him out. We have a girl in our class who is moving to half days on Wednesdays and Fridays as she usually loses the plot a bit on these days (we have PE Wednesday mornings which sends her a bit sideways, and by Friday she just wants to cuddle on my lap). Keep remembering that you don't need a diagnosis for any of this. It's just asking for what your son needs to make school a positive experience, and for him not to melt down afterwards.

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