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Struggling to get a diagnosis

Milly

Hi, I have a 12 year old son that has struggled for the last 10 years. I have finally got some help from camhs  and he is seeing them fortnightly, they have said on paper he is on the spectrum more than others but in person it's a different story. He is knocking heads at school with the teachers and they see it as defiance and they aren't putting strategies in place because a diagnosis hasn't been made. We have joined the waiting list but have been told it could be up to 2 years before a diagnosis is made. Any advice is gratefully appreciated as I don't know what to do and feel a bit lost.

Parents

  • The 'two year wait' seems to be a way to prepare you for the worst, and probably so you can't sue. I don't personally know anyone who has had to wait two years before getting assessed, but you can expect to wait at least a few months. The service for autism I was in contact with only answered the phone once despite the fact I called them daily for weeks on end, and if I hadn't consistently left messages on their answering machine I don't know if I would have been seen to. But I think if you bother whoever you have to, and you make yourself known, you can make progress. It's an exhausting and frustrating process, but it's worth doing, as it can be much harder to get a diagnosis the later you leave it.

    Although that's a rather negative account, I think it's really worthwhile. Also, in regards to school, sometimes it seems to be different from person-to-person, since I know cases of autistic children who are treated entirely differently by the same school. If the school continues to give you grief, it might be useful to keep a record of what they do and say, so if you need to you can report how you and your child have been treated.

    Doom and gloom aside, I really hope it gets better for you, and you get the support you need.

Reply

  • The 'two year wait' seems to be a way to prepare you for the worst, and probably so you can't sue. I don't personally know anyone who has had to wait two years before getting assessed, but you can expect to wait at least a few months. The service for autism I was in contact with only answered the phone once despite the fact I called them daily for weeks on end, and if I hadn't consistently left messages on their answering machine I don't know if I would have been seen to. But I think if you bother whoever you have to, and you make yourself known, you can make progress. It's an exhausting and frustrating process, but it's worth doing, as it can be much harder to get a diagnosis the later you leave it.

    Although that's a rather negative account, I think it's really worthwhile. Also, in regards to school, sometimes it seems to be different from person-to-person, since I know cases of autistic children who are treated entirely differently by the same school. If the school continues to give you grief, it might be useful to keep a record of what they do and say, so if you need to you can report how you and your child have been treated.

    Doom and gloom aside, I really hope it gets better for you, and you get the support you need.

Children