Asd test - told no but still sure....

[2boysnamedR]

So quick recap. Ds dx with dsypraxia and SPd last year. This year language disorder as well. Going to appeal over nil next month. As part of the appeal I got a private ep. I told her that I have always suspected asd.

Ep observed ds at home and school. Did two checklists and agrees he could have asd.

I asked his old pead but she said he makes eye contact and smiles so it's not asd. I was a bit sceptical but accepted at the time. He has a new pead so I asked her with this ep report will they re think testing him.she said as old pead says no then that's been ruled out. Therefore she agrees. She says all his quirks can go under dyspraxia. He has had two peads say no and one crap salt who told me he was 6 months delayed in speech ( but subsiqent tests show three years and it's a serve language and word finding disorder!). Therefore that's it.

But it's not two peads agreeing really. She won't revisit what another nhs pead has said. She hasn't really looked at him with fresh eyes.

Not sure about point of this post. I'm just confused and pd off. If they are so sure why not test him to shut me up? I KNOW he has asd

Can you afford a private opinion? Would the NHS -maybe the GP- agree to refer on for a proper second opinion (Great Ormond Street?)
I'm trying to remember if your other dc has a diagnosis yet or not. With a diagnosis in a sibling, it's harder to fob you off

Does it really matter if he has ASD or something else? They should be looking into ways to help him with the things he's struggling with so a diagnosis shouldn't really make that much of a difference. I'd concentrate on trying to find a way to make life a bit easier for him myself.

His younger brother has a inherited duplication from their dad which is associated with asd. Pead did say if little brov gets dx then they may test ds - which makes me even more confused. As if it defiantly not worth testing then it's not worth testing.

Lady - that's what I'm wondering. Should I care if he has asd?! As everyone knows he has sen and hopefully he getting the help for it

Ds had one saying he was probably on the spectrum, one saying he wasn't, and the OT said he has DCD. It didn't matter to us as long as he received the help that he needed with mobility and social skills. He received neither as cahms wouldn't see him and the physio was useless. The 4 sessions the OT gave him were enough for his handwriting to be assessed and for him to be allowed to use a laptop at school, so I suppose that's something. I doubt a diagnosis would have made any difference.

Get a second opinion. Sounds like even if they test they've already made their mind up. I found in our first round of these assessments they explained away each of my sons inabilities such as not being able to pretend down to something else. We went for a second opinion and had a totally different experience even with the same NHS trust. Get a psychiatrist to do it!

Hi 2boys. My ds' assessment and dx followed a similar path, and we did end up with an ASD dx:

1. Saw private neurodevelopmental paed - dxed SPD and anxiety. Thought did not meet ASD criteria but agreed to refer to ENC for their opinion re PDA.
2. Saw NHS paed who barely looked at him, but looked at what private paed had said and basically said the same thing (incl. "not ASD but symptoms of PDA").
3. Assessed at ENC who dxed ASD with a PDA profile.
4. Seen at CAMHS who discharged him as they thought his anxiety due to ASD not a separate MH issue.
5. Seen again by same NHS paed who looked at ENC dx and accepted that (said she had been going to suggest further assessment for ASD but now no need).

When I spoke to the enc lead psychologist about why we'd had differing opinions, one of the things she said was that they had observed him for several hours and that many aspects of his profile were subtle and would not necessarily have been observable in a shorter assessment.

Anyway not sure if that's of any help to you but just saying that it's worth getting another opinion! The ASD dx has given me peace of mind, and has also given us something more readily accepted and understood to use as the basis for requesting support.

Its about NHS resources. Children's services are the Cinderella of the NHS; they are probably over-stretched in assessing the children. If they believe he does not have ASD, and do it "to shut you up", then in their eyes, that is time taken up, which could be used on another more severe child.