Dyspraxic Adults

Hi again

I've been doing much more research and I'm convinced I was misdiagnosed years ago.

I definitely have congenital hypothyroidism from birth which I have been on medication for all my life. However this wasn't discovered until I was 23 MONTHS old (I was born in the 60's when I guess they didn't test for it in newborns). BY this time I was apparently a very floppy baby who just laid staring at the light on ceiling, couldn't even sit up unsupported never mind crawl, walk or speak.

After being put on medication and given intensive physio I managed to achieve walking but still struggled with speech, struggled to learn to ride a bike until a much later age, never learnt to swim or master driving. I always had a severe stammer and due to being bullied and teased for it developed a phobia of speaking in public.

I knew exactly what I wanted to say but really struggled to physically get the words out. I have always had this (despite speech therapy) and believe it fits the verbal apraxia part of Dyspraxia. As I was also very shy and refused to speak in school and found things overstimulating very quickly I was eventually diagnosed as 'Autistic, possibly caused by the delay in Hypothyroidism' (until I was nearly 2 yrs old).

When my thyroid started going wrong in my 30's some of my initial physical co-ordination problem resurfaced but Dr's were looking at conditions that would come on suddenly in adulthood such as an MS attack etc I was eventually told I had Ataxia which meant problems with balance and co-ordination, but they didn't know why and it would cost too much to test for everything. I was basically told to go home and get used to using a wheelchair!

Fast forward 15 years and since getting online and doing my own research I've managed to recover some physical ability (though still need a wheelchair for distance) and then started looking into the autism diagnosis too as I don't feel I fit in fully with the autistic community.

Looking further into dyspraxia and the overlap between the very similar symptoms (sensory overload, co-ordination issues) there seems not be a single symptom would say 'this can only be dyspraxia cos it doesn't happen in ataxia or autism' or vice versa, so I even if I tried to find an adult expert for re-diagnosis I'm not sure they'd be able to confirm it either way as I'm now 50 years old?

Has anyone else been misdiagnosed? did you pursue the correct diagnosis? ..if you were on benefits (based on your original diagnosis) did you then have to inform them and did they change your amount? ..did they say they'd have to look back at how long you'd been misdiagnosed and whether you had to pay any money back?

or are the symptoms so close/entwined that it wouldn't be worth the stress for the sake of having it on my official medical records? I mean technically Ataxia is listed as a symptom of Dyspraxia and so are sensory issues (also seen it described as 'autistic-like sensory issues') So how do you seperate them???

Thanks

Susan

Hi again Susan

I hope I'm correct in remembering in the Irish Republic?

Dyspraxia is complex and many of us have other conditions too. That said it is understandable you feel ill at ease. Other people have asked similar questions re misdiagnoses here before.

I'm unfortunately unfamiliar with the rules of your benefits system. The UK system tends to be based more on the degree of impairment and how it restricts your ability to perform day to day activities, rather than the condition(s) you have. I'm not sure what help there is in Ireland though you can of course contact Dyspraxia Ireland www.dyspraxiaireland.com. Helpline 01 8747 085.

I hope this helps somewhat.

I was never misdiagnosed, but I was refused diagnosis at school and did not get a diagnosis or support for another 5 years. I don't know how helpful to you/medically accurate this is, but I find it useful to think of dyspraxia and similar conditions (other specific learning disabilities, ADHD, ASD etc) as simply words describing a range of symptoms - there's not necessarily an inherent 'thing' within the brain which makes something one condition and not the other. We just draw a circle around most of the relevant symptoms and match what's in that circle with the best-fitting word. A lot of the symptoms cluster in different ways so sometimes we need to draw a couple of circles, getting those co-occurring conditions.

Which is to say, diagnosis can be a pretty arbitrary process, depending on how those circles were drawn. It's entirely possible to have dyspraxia, autism and ataxia simultaneously. You do not necesarily have to separate them.

I don't know much about irish benefits but I would not imagine they would want you to repay money if everything in the medical report and application is true - whatever the name of the condition, how it affects you will be unchanged. I'd recommend contacting Citizen's Information to discuss potential repercussions for your benefits if you're worried.