Has anyone decided to ask the paed not to make an ASD dx official?

[Twoseventhsaweasley]

DS1 is 5.8 and in year 1 at school. This week the community paediatrician has said that she is happy to give him a diagnosis of ASD if it is what we want.

We have asked for more time to think about it. We have discussed it over and over. There seem to be many good arguments for both getting him an official dx and asking for him not to be given a dx.

Has anyone decided against a dx?

Was it the right decision?

Has not having a dx caused your child any problems?

I realize there is not one correct decision. We are just so unsure about what to do.

Thank you

My thinking is, if you have a diagnosis and don't think it will help your child for somebody to know this, then you don't tell them. However, when there are situations when having a diagnosis would be an advantage, you can't whip it out of an envelope if you've not got one. So I'd definitely get one if I felt it was true.
There are many occasions when only children with a diagnosis can access services or help.I wouldn't want to risk depriving my dc of that.
There are also many occasions when it is a short hand piece of information you can give to someone they are spending time with - much harder to launch into a list of 'quirkiness' and how to deal with it. Although, again, you wouldn't necessarily have to tell everyone if you didn't feel it appropriate at any time.

I'm sorry you are feeling so unsure about this, it is a huge step. Speaking from 4 years post diagnosis (DS was then aged 7), we agreed to diagnosis and my goodness am I glad we did. Although it was upsetting at the time, it has made life so much easier, even just in the sense that I find it far easier to talk to other parents about SNs with something concrete as a starting point. Not to mention that is has set us on a far firmer course for getting him the help he needs for school via a statement.

It takes away all the doubts, the what-ifs. For example if DS is behaving unusually, I can just say to someone, he has Asperger's Syndrome, which makes it hard for him to cope with such and such. Or he has dyspraxia, which is why he still can't tie his shoelaces. Without those, you would just be waffling on, same when you come on these boards, you can find other parents with DCs with the same conditions, you don't have to describe everything every time. It's hard to explain really. It has made me feel way more confident and effective in supporting him as a parent is the bottom line.

If you can put your hand on your heart and say that your son's condition is not causing any problems that cause difficulties in his or your lives, and he doesn't need any extra help with anything, then maybe there's no need. However I suspect if you have gone as far as having assessments made you do feel concerns about these things. Looking at it another way, if you were concerned about your child's hearing, and were to receive a diagnosis of deafness, would you turn that down? No, because it would go a long way to getting them the help they needed. I hope I haven't been too blunt, it is not an easy place to be in, I hope you come to a decision you are happy with.

Toddler might be getting this formally dx been told it could be a " working dx" so can be changed later if needed.

However also been told it will open many doors for him. So overall it's a good thing.

Totally understand your reasoning. Ask about the pro and cons with your pead. They know there are pro and cons. It's just agreeing a balance.

I know it's also hard to do - but step aside a little bit and look at it from your child's point if view ( I'm sure you do, but I sometimes get wrapped up in the "me" part) what's best long and short term? What can change and how much time can you spend having a really good think?

If you say no now can you go back? If you say yes can they remove it if you feel it no longer fits in 6 months, a year etc.

No wrong or right so go with your gut but using some real facts

Ds saw 2 different paediatricians and got a 'no' from one, and a 'maybe' from another. He saw an OT who diagnosed dyspraxia so I don't think they really knew, he hasn't seen anyone else. I didn't think a diagnosis would have helped him, there wasn't additional support for the social skills issues that he had so we were pretty much left to it. I do have times when I'm never quite sure though. He doesn't have traits apart from poor social skills, no need for routine, no obsessions but it's there at the back of my head now. What if he does have ASD and I've done nothing. I'd check, just to put your mind at ease.

One of my ASD relatives went to special school. He learnt mainstream communication - in effect as a second language. He has got so proficient that he works, pays his taxes, is married and you would never know.

Obviously he has very little need of the diagnosis but it is there to fall back on if some element of his behaviour turns out to cause difficulties because of the incorrect assumptions of the mainstream folk.

But without the diagnosis, he would never have got the special school and the quantity of language therapy that got him to wedded bliss and happily ever after.

In his own words 'without the help, I might have found a way of interacting with the outside world, maybe through the computer from my room, but my outlook would have been very bleak'.

I hope this helps

DS is 9 and recently diagnosed with HFA and ADHD. It won't affect him currently. School are managing him well. But we think it will be a benefit when he goes to secondary. Lots of different teachers each day, lots of new kids etc.

Consultant has advised us not to tell DS at this stage.

For us it is about making sure he has support and understanding going forward. Yes, he can be difficult but there is a reason.

I can see a good reason to decline if you think the paediatrician is barking, and the diagnosis is wrong. Or if your DS really is 'borderline' and (say) his dad needs a few months to get used to the idea first.

But, as said above, if your dc has got ASD, not labelling the 'differences' will probably lead to them being mismanaged in school.

In our schooldays, children with undiagnosed ASD or ADHD often got wrongly labelled as 'odd', 'stupid', 'difficult', 'naughty', 'easy-to-bully', 'not listening'. None of these are protected characteristics under the Equalities Act. None get you extra help at school, extra time in exams, a bit more patience from your parents.

In my opinion, wrong 'behaviour' labels tend to cause longterm issues. Whereas having a well-managed disability potentially causes minimal impact on adult life.

Zzzz, if the paediatrician called it 'suspected Asd' or 'probable ads' would that get around the US visa/Forces thing? Driving is less of an issue- the DVLA can't discriminate unless it's in their 'conditions which make you unfit to drive' book (eg visual impairment)