Help: no one knows about dyspraxia

[Xistens]

Last week I started my assessment to find out if I have dyspraxia. The psychologist was really nice and she realized that my difficulties are causing huge problems for me in my daily life, especially when it comes to work and studies. She said she would try to help me to get the right help, but there is a problem:

Dyspraxia is a very unknown diagnosis in Sweden (everyone is familiar with dyslexia but most people have never heard about dyspraxia other than DCD, and then always in combination with ADHD as the main problem) so the psychologist didn't know where to refer me. She can't help me beacause she said that she don't know much about dyspraxia and she did not think that anyone else there is knowing more about the diagnosis either. That is a big problem for me, because I'm desperate and I need help as soon as possible because my dyspraxic problems is very disabling for me.

In the end, the psychologist decided to refer me to a psychiatrist at the same place so now I hope that he could help me or refer me to someone who can.

I am a bit scared that I'll be passed around between various psychologists, psychiatrists and occupational therapists, without getting either help or a diagnosis because no one has sufficient knowledge about dyspraxia. The psychologist said that dyspraxia is so extremely rare and that is why they don't know much about the diagnosis in Sweden but I thing she's wrong when she says that it's "extremely rare". I don't thing dyspraxia is less common in Sweden than in England or elsewhere, but I think that many Swedes who sould be diagnosed with dyspraxia become misdiagnosed with ADHD, Aspergers syndrom or any other diagnosis.

How does it work in the U.K. if you suspect you have dyspraxia? Where do you get help and which help do you get? If I know how it works in England perhaps it will be easier for me to get help in Sweden because then I can say "this is how it works in England" and maybe the medical staff will find a way to help me then.

[ALADDIN]

In the UK, the support is bad, especially bad for adults. The N.H.S will generally not diagnose adults. Knowledge among GPs is generally poor. Awareness amongst employers is poor. The Dyspraxia Foundation is very slow (maybe the reason is a lack of money. I think it is not well recogined in society compared to aspergers and autism but around 6% of people have dyspraxia compared to 1% having aspergers/autism. I think dyspraxia is new (1990 was the tear the condition became mainstream).

Support is better in the USA (not diagnosis) I think.

[Osymandus]

Well be glad your not in Norway , as lovely as they are for most things their very bad at acknowledging any form of learning difficulties .

In the UK it is getting better , but a problem certainly with adults is they don't want to get tested or they think its too mild or i can cope no need to bother anyone . Now il confess paid for my diagnoses and teh best £400 i ever spent .. it was then refunded by my employers as most will do so (its not compulsory but its seen very badly if your company does not do so for future issues).

Emphasis has been on children and in many ways rightly so , however they are now noticing a gap from 16+ , young adults which is where we older ones come in , volunteer for The Dyspraxia foundation raise awareness . Some GP's are bad , some arnt though , mine has been very opening and willing to receive information (so he can pass on to people who come to his surgery) .

Disabilities are alwasy seen and delt with , with fear or confusion sadly though a lot has changed to alter that perception. , invisible ones even more so , we don;t have any immediate physical clues (also Aspergers , mental health issues , Arthritus , ME etc). Sometimes you have to just go out there and say im differnet to you maybe wear a badge (thought hopefully not go as far as you and 7 mates in dresses barracading themselfs away from police to cuase social change )

[peterkeegan]

I agree that Dyspraxia awareness in the UK is not great especially with Dyslexia, Asperiers, ADHD etc. Support for Dyspraxic adults is not great either in fact its very poor.

I work for the NHS most Doctors and Nursing staff have never heard of it but a friend who is a nurse practitioner has really good knowledge and of dyspraxia and understands how it can impact on that persons life. I meet up with him fairly regularly to discuss if a particular day has been crap in work or pick his brains on something. Most Physios and OTs seem to have some knowledge of it.

Access to work has allocated money for Dyspraxia and Dyslexia awareness to provide knowledge for my colleagues though trying to get things going is proving difficult to do.

I also think Dyspraxics and the Dyspraxia foundation could do and should do more to raise awareness. The supoort groups need to be more proactive in their respective areas and a AGM is needed. Write/email/phone your local MPs and house of lords to raise awareness.