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63 watchers
1 Feb
9:42am, 1 Feb 2021
119 posts
  • 0
After being here a few weeks I’ve finally been signposted here!

I’m a late diagnosis mum (diagnosed at 49) of 2.

My oldest is 17, he’s been problematic ever since he went to high school. Lives in denial which is fine by me if he is bimbling along ok.
The youngest is just coming up 10, the referral has been taking a long time, obviously the dreaded C isn’t helping matters but we did have a meeting at the hospital with the specialist that didn’t really go very well, I try not to think about it! The school are supportive! He’s doing alright at the moment because he’s at school with vastly reduced numbers. Maybe I’ve got enough to think about without picking these things apart today!

Not sure why I’m down here waving a flag! But here I am!
1 Feb
10:48am, 1 Feb 2021
1181 posts
  • 0
Hello LGJ :-) I was diagnosed at 46 (self-diagnosed at 43). No children, but a few people dotted through my family tree who fit the bill too.
1 Feb
12:44pm, 1 Feb 2021
1902 posts
  • 0
Hi Lgj, glad you made it here ;-)
If you have the time to read back in this thread, you'll find lots of relevant information, especially for children, about what help and support is available, and some discussion about whether there is any benefit on children being diagnosed (a very brief summary is - yes, if the child needs support,
no, if help isn't needed and the child is comfortable with themselves,
maybe, since official recognition can give legal protection in some circumstances).
I can't really give much advice on any of that since I was a very late diagnosis (60+!).
1 Feb
12:57pm, 1 Feb 2021
120 posts
  • 0
Ha, thanks flatlander (I love this name as I’m a born flatlander so it’s something I’ve always considered myself)

It’s a difficult thing, I went for diagnosis in particular to help the youngest because of how things have played out for the oldest!
The dr (I have the letter but it upsets me to read it because I want to respond to him but can’t find the right words) had a oh he can do a,b,c, d and e I can’t really see asd, my reply was yes I can do all of those things.
Also being asked questions about my child infront of the child, it just doesn’t seem right, I can’t speak freely about him infront of him! That’s part of what I need to write down and send before our next meeting!
1 Feb
2:17pm, 1 Feb 2021
1903 posts
  • 0
There are guidelines for GPs to follow which leads to NICE guidelines . There are various other NICE guidelines.
As an adult I was required to answer an A10 form before my GP was allowed to refer me.
1 Feb
2:52pm, 1 Feb 2021
121 posts
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It’s not the gp, this was the dr who is supposed be assessing my son! That’s why I don’t hold out much hope of a diagnosis.

I’m just not really cut out for the battle, I could speak for myself and I know that my son is like me but just knowing will not get us the diagnosis.

Yes I know all about the nice guidelines, I often direct other adults like us to them.

Things are very different for children and the forms and things you have to fill in! I can’t stand what is beginning to feel like hopeless hoop jumping!
4 Feb
1:27pm, 4 Feb 2021
11081 posts
  • 0
Finally after a long battle my Grandson has his EHCP finalised and his first choice of school has been accepted. Hopefully things can improve for him now, when he can return to school, but for now homeschooling with a new school. He is a very happy and excited 13 year old
4 Feb
1:45pm, 4 Feb 2021
3733 posts
  • 0
Great news!

With an EHCP he should be entitled to attend school in person. Obviously choice comes into it but AFIK the school can’t refuse if he wants to go in.
30 Mar
1:06pm, 30 Mar 2021
4679 posts
  • 0
mr d
The last 15 minutes of the Naga Munchetty show on 5 live today featured Dr Anna Rimmington from UCL talking about employment opportunities for autistic adults.

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