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.

To go back to the original questions, yes its been useful for us including financially

1. We got high rate DLA about £50 per week without any hassle we would have had to appeal to get any DLA without a dx
2. We get support from social services in form of carers group / activities for siblings, 2 hours per week direct payments and a free baby sitter once a month - their criteria would rule out anyone without a label (not right but the way it is and will increasingly go)
3. We get extra tax credits of about £1400 a year off the back of DLA
4. Since age 5 we get low rate mobility (about another £20 a week)
5. We can claim carers allowance of another £50 per week
6. All of the above have meant we can do ABA and be fully involved with helping DS, get by with one of us not working, which means we don't have to bother with after school clubs etc which would be horrendous and unsuitable
7. The school and other children do understand him better and are much more accepting.
8. Other parents are accepting (so far) we do not get shunned in the playground as the parents of the naughty boy which we almost surely would if they did not know it was asd
9. we got a tribunal to fund a fulltime ABA programme which has basically saved DS from a lifetime of failure.

10. Cuts to benefits and services are going to mean only the most severely disabled will qualify for any help in future 11. The government have indicated this week it will support a right to education until 25 for children with autism, which if it goes ahead will be a huge relief as although DS is bright enough to succeed, he is also pretty delayed and may not hit the academic buttons at the right age.

DS is 5, very bright, but very autistic. If he were ever able to have the outcome you have achieved I would be delighted and at that point he could just stop telling people about his diagnosis. There is no obligation to disclose it.

I wouldn't assume you can get a statement without a diagnosis, a significant % of children with a dx cannot get a statement

Two of my children have a dx of ASD. Both are at the high-functioning end of the spectrum.

Neither of them have ever been held back by the dx and no-one has lower expectations of them than they otherwise would. They have been helped with their weaker areas but also challenged to help them develop their strengths. Both have areas of interest where they are considered to be gifted, and the dx has helped them to get through some of their tougher times so that they are in a position to be able to develop and use those gifts.

Both have gone through periods of time where they have made huge amounts of progress, to the extent that people who knew them pre-progress barely recognise them as being the same child(ren). However, there have also been periods where it has all gone horribly wrong and their dx has been a godsend in showing people that there is a reason for it.

Thankyou everyone for replying and helping me to understand the importance of a dx. Knew I was missing something. Guess it was a gut reaction, I needed educating! Thanks again. Feel much happier about it.

I've found ds's dx to be a mixed blessing. It was of no benefit to him in school because the way he presented didn't tally with the stereotypical Aspie he was expected to be from the two hours of training staff had had, therefore he was just naughty, difficult and poorly parented (given a choice between labels, I know which I'd prefer, and they're all labelled to some degree). I came across far too many professionals like this who would get very defensive that ds didn't respond 'in the right way'. He had massive anger issues but because that didn't fit the profile they'd been trained to expect, then they didn't know how to support him.

The dx didn't give him/us access to much in the way of statutory support. There were a few minor interventions offered to him in school but nothing specific to his needs, just generic social skills groups and it was his fault if he didn't improve from them. Once he was labelled as autistic the CAMHS team didn't want to know because there was nothing they could offer, so his case was closed and no other services were available in its place.

However, having the dx has opened doors to services provided by independent charities who have a tight remit and can only accept clients with a confirmed diagnosis. Same with some training courses which I wouldn't have been able to get on if ds hadn't had the right piece of paper. So I was able to learn how to support him and he got to be part of projects that helped him learn how to support himself.

Overall though it does help because it gives credence to the behaviours that go along with it. I find I'm taken more seriously now as a parent because I can say "He has autism" rather than "He has autistic traits" - some professionals still think that not having a diagnosis means it's not warranted, and some have a very black-and-white view of the dx so that a child either has it with knobs on or has no real problems at all and just needs firmer discipline .

Ultimately if you have the diagnosis you can choose what to do with it, when to disclose, when to keep it quiet. If you don't have the diagnosis it's likely that you'll find that quite a few doors are closed.