how do I get a diagnosis changed?

[mimsum]

ds2 was diagnosed at 4 with ASD, I feel the diagnosis was rushed through, partly because his older brother has TS and AS. For example, he didn't have a multi-disciplinary assessment, was just observed by a teacher from the Early Years Centre and had an appointment with a paediatrician who's got a real bee in her bonnet about autism and tends to see everything through that prism.

However, I've never been comfortable with the diagnosis as it just doesn't seem to fit ds particularly well. I'm not being head in the sand about it as ds1's diagnosis fits him perfectly. The more I find out about dyspraxia, the more likely I think this is ds2's problem. He's very clumsy, has poor co-ordination, problems writing (he still can't hold a pencil in a tripod grip), getting dressed, organising himself, was very late to ride a bike, late to learn to swim and although he can swim in a fashion he looks very awkward and finds breaststroke much easier as both sides of his body are doing the same thing at the same time, when he runs his arms and legs seem to stick out at odd angles, low muscle tone, suffered from chronic constipation for years, flaps his arms when excited, but is basically very happy in a dreamy sort of way.

How do I go about getting his diagnosis changed? any ideas?

thanks

Hi mimsum,

I don't have any answers for you, I'm afraid but I completely sympathise with how you are feeling.

My DS1 who is nearly 9 was a dx of AS and I have never been comfortable with it but don't know how to change it or even if it is worth it.

When he went through the whole dx process the consultant clinical psych said he had AS traits but not enough to warrant a label. However, he also has a lot of dyspraxia type features and all the help he has had since the dx 4 yr ago has been for those. He has a daily OT programme at school.

Unfortunately, when it came to his dx meeting, where all the professionals who saw him got together, nobody except me and the SENCO had actually met him - the rest of them, the paed, the psych and the SALT were working from other people's notes and, in my view the most important person, the OT, wasn't there at all.

Seems to me that they hand out AS dxs because it is better known and understoond than dyspraxia by the wider public and even the teaching profession. It is the 'easy' option - not to deal with obviously but to get recognition.

I kick myself that I didn't argue more at the time and I have discussed it with the OT but she says they don't give a dx of dyspraxia much and anyway what does a label matter?

It matters imo because I really don't feel comfortable telling DS that he has AS. I have looked at many books on both AS and dyspraxia and I can't find about AS where he has more than a few ticks against a checklist yet I can tick virtually all of them on a list of dyspraxia list.

As you mentioned, questioning does make it sound like we are hiding our heads in the sand but, I know that DS is not the same as normal children but I do think all his AS symptoms are only those that overlap with the dyspraxia symptoms, because as with a lot of these conditions, there are huge overlaps, aren't there.

Sorry I have rambled on but I just wanted to show why I sympathised and share your frustrations.

I have wanted to started a thread like this for ages (you have saved me trouble now) so I will be interested to see if there is anybody who has managed to get a dx change.

sorry - I can't find anything about AS.....

Sorry for all my other typos too.

Thanks Niecie

I'm not sure how much difference changing the diagnosis would make - obviously ds2 would still be his own idiosyncratic self!

But I feel very uncomfortable about it - yes I know lots of the symptoms overlap, but I get the feeling that teachers/professionals etc see the 'ASD' diagnosis and "miss" the real ds2 - not sure if that makes any sense?

I think it makes perfect sense actually.

If people know my DS's dx he is the boy with AS but it much more complicated than that. He isn't typically AS yet people assume that he can't do things that he can and can do things that he can't and it feels like half his diagnosis is missing.

Anyway, this is about your DS. Did he have a session with an occupational therapist during his diagnosis process? If you didn't, I would think you have a good reason to see one and in doing so get him seen and maybe reassessed. OTs so have a say in a dx - at least they are supposed to.

No harm having a word with your GP about it.

Ask either your GP or school SENCo for a multi-disaplinary review assessment and you should get referred to your local Child Development Team and be reviewed by a paediatrician and hopefully some other professionals, e.g. SLT, OT. It is important to mention that you think it is Dyspraxia as this may mean an OT can be involved in the review.

Dyspraxia and ASD are quite different and require different input in school. Dyspraxia will result in an important referral to an Occupational Therapist who could help with things like holding a pen correctly.

Is there a Speech & Language Therapist involved? If so, ask them for their opinion on the diagnosis, s/he will be able to help direct you to the right department for a review.