NHS Diagnosis of ASD

[OhToBeABuddha]

My DS 2.5 is about to have an assessment for ASD. I would love to hear your views on whether you think a diagnosis is useful or not and why.

My DS has been delayed but has made significant progress using a Verbal Behaviour Approach since we started 4 months ago, he has just started to speak.

The NHS don't have the resources to help him, so I'm in two minds about whether a diagnosis will benefit him, bearing in mind, you don't need an official DX to get a statement.

So what does he need an official DX for? It's just a label isn't it? And a very broad non-specific one at that, which most people know nothing about.

I'm probably missing something here, so would love to hear your views.

Also, do you think a diagnosis can ever be detrimental for a high functioning child?

My two cents? Yes I feel the label is useful. I knew at 6months that there were issues for my DS and it took another 7 years to get to a point where he had been assessed and 'labelled''. It would have been easier for me (that I am not imagining it/ manufacturing an issue for my own ends/ communicating with school) if I had that diagnosis.
Now I am glad that I have it, although my decision so far has been to keep it private. My family don't know (too many years of 'oh he's fine, all boys are like that'), school are being discreet and I dont tell friends etc.
Also because he is very high functioning the assessment process has identified that he needs extra outlets to maintain his interest (perhaps not G&T but bordering).

yes i found it helpful, especially for schools. They like black and white, so easier to say "T has autism and so struggles with a,b and c" than "T struggles with a,b,c."
It also helps dd understand why she struggles with certain things and knows its not her fault.

Absolutely essential, especially the way things are going. There's little enough help for kids with dx's and statements - if you don't have the label it's going to be harder to access anything and will be impossible in the future IMHO.

But going through the dx process is shitty as well and churns up all sorts of feelings. No-one wants their kid to be different so going through dx-ing does highlight all sorts of things. Conversely, for some parents on the board the dx has been a relief - I know it was for me, although the struggle to get there was horrendous.

Can you think of it as a signpost rather than a label.

A signpost points people in the right direction to support your child. You can choose who you tell.

It took alot of fighting to get a dx for my Dd3 and a lot of soul searching. I know we did the right thing, she needs suport and understanding especially at school. Without a dx the help is hard to come by.

Good luck whatever you decide.

For us the dx was essential in ensuring we were listened to and taken seriously. Without it, my ds's difficulties were ignored until he could no longer cope and we found out we could go for a referral via the GP - he was nearly 9 by that time and we had been raising it with the school since Reception year.

He is now well supported and happy at school and is just going through Statutory Assessment. The only thing we regret is not realising that we could go to the GP for help years before we did.

I was worried about him being 'labelled' when we first started out, but now he has a dx I actually don't see it like that at all. For us its more of a 'reason' for the difficulties he has and and 'explanation' of why he does certain things. I suppose I don't see it as a label because he isn't ASD he has ASD and there's quite a difference between those two statements.

Have you ever felt that the doctors doing the dx are not competent? Or is it just me?

Our pead is very good so no. No dx was ever done on first visit and without 3 different professional opinions

I guess I'm worried about sweeping generalisations and ignorance surrounding Asd. Asd is so different for every child, I don't want him pigeonholed. I would rather a dx which said what his strengths and weaknesses were, that would be great. A label of Asd IMHO is pointless. Ds is an individual and he doesn't fit a type... He just had some areas of weakness and some incredible strengths. Hope that makes sense.

They want to dx him in a 2 hour window in a place he's never been to, with people he doesn't know and toys he's never seen, he's going to find it challenging. I believe his problems are due to a visual condition he has not necessarily any significant Asd traits but the professionals are really interested.

That should say...aren't really interested.

I guess my situation is complicated by the visual component.

But 'spiky profile' is part and parcel of ASD. Each child's profile is different. So long as you use the DX well, I believe it's beneficial. For a very HF child, by all means keep it confidential, but be aware that HF children often have more difficulties once they approach adolescence and that's when a DX can help them to understand themselves. (IMO)

Thanks Ellen, that's something I have been thinking about, how his challenges will manifest as he gets older, right now, can't tell. I am going to go through with the assessment as I know many people fight tooth and nail to get one. Just want to do the right think by ds. Right now , the dx won't make a difference but I can see as he gets older and into school, it might be a life saver.

I feel like I've already started to help him and accepted his difficulties, I guess I don't feel the need for the label but as some have pointed out... Others might in order to give him any help he needs.

I think it's a MN SN board thing, we all (mostly) seem to think a DX is beneficial. Maybe it's because we post on here, and are immersed in a SN world.

That's the thing, I don't want to immerse him in the SN world... Sounds awful I know... He is extremely bright although I understand eccentric. We have many family members on either side who are the same and no dx, I don't know if him having a dx will become an excuse for him not being challenged. Both myself and my partner were delaye and very not 'NT' until maybe 18, but we are happy fully functioning adults who just get on with life and rise to challenges we have because we have too.

I know DS can overcome his difficulties, I'm not deluded, he is capable, but he doesn't want to do things due to lack of motivation. That's life isn't it...

I didn't want a dx because I saw it as a label, but am very glad to got one. It has opened doors to meet DS's needs which he wouldn't otherwise have had. As he's got older (now 10 yrs, dx AS at 4.5 yrs) there are more differences and I have a card which I can place on the table in a restaurant for our waiter/waitress to see. This has helped them to engage with DS and cope better with some of his direct questionning. We only mention dx when we have to.

For us, definitely a plus having dx.