help and advice for diagnosis of autism/aspergers - Mencap

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help and advice for diagnosis of autism/aspergers

cantgetthrough profile image
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hello all......i feel and have always felt that something isnt quite right with me and have been diagnosed with personality disorder after first being i think misdiagnosed with severe depression and anxiety in 1982.how now to get a true diagnosis as back in late 70s/80s autism didnt appear to be that well known if atall......any advice very much appreciated.....thankyou all david.

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cantgetthrough
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Soins61 profile image
Soins61

Hi David,

I support my daughter who has aspergers now called Autism Spectrum Disorder, my daughters first assessment was a private one after she experienced a shut down., I was desperate to try and get help for her, whilst seeing a clinical psychiatrist he suggested she may be on the Autism spectrum.

After an initial private, multidisciplinary assessment ( this cost approximately £3,000) when she was identified as having Aspergers, it helped her to understand herself better sensations and feelings, the way she interpreted things, it also helped us to have a better understanding of her. She then developed severe anxiety. A few years later when her anxiety became much worse, our doctors made a referral to the Autism team asking them for their assistance. They wouldn't recognise her previous diagnosis and preferred to do their own, she's just completed this, with the same outcome, it's taken 19 months! She first had to pass a triage stage, which involved letters from her Occupational therapist, and her doctor, even with covid I believe it would have taken well over a year. They say that depression and anxiety are not part of autism, but can be as a result of trying to cope with a society that doesn't quite fit the way people on the Autism spectrum interpret and experience the world around them.

I wish you luck on your journey it could take a while....

In another note apparently Mencap are completely overwhelmed at the moment I have also been trying to get hold of them.

RaynyBaby33 profile image
RaynyBaby33

Good morning David, I'm sorry to hear of your struggles and misdiagnosis. There are a few options. Firstly, for advice the National Autistic Society, they have lots of very useful information, and ideally should be your first port of call, you can ask your GP to make a referral for an assessment via the NHS route or by going privately which clearly has a huge cost attached to it. I queried for my 15 year old daughter , and was quoted between £2500 to £3000. I wish you the best of luck.

LDAutie profile image
LDAutie

Hi david, i apologise so much if this post turns out to be huge,I have quite severe epilepsy which has fully damaged my working and short term memory.

I have known several people once diagnosed with PDs,and they were rediagnosed with aspergers by the NHS.

The common ones to be wrongly diagnosed with are asPD and bPD.

Females are more likely to be given a PD diagnosis over an ASD diagnosis as there isn’t much research done on the ways they show autism,and of the little out there it’s very stereotyped, one thing many people will advise you that is very true,don’t go privately as it’s a waste of your money-a diagnosis will not be listened to.

the same coud be said for males who don’t fit the male/so called ‘left brain’ stereotypes,it is sad we are put into gender stereotype lists and if we don’t meet them we can get not diagnosed.

make sure you go to a specialist who has a lot of experience working with adults on the spectrum,contact the national autistic society’s helpline through phone or email as they can give you a list of specialists in your area as well as sheets you can fill In to take to your doctor,Mencap as much as I will always love them-is more for learning disability (which in the UK means intelectual disability,it is confused with autism a lot -by many as I think the American manual DSM sees it as an LD).

You might find more support in the autism group on health unlocked-I’ve not yet used it I don’t know what it’s like...or if you don’t mind using traditional forums-a neuro diversity site like NDSA.org.uk which has quite a lot of pre diagnosed or late diagnosed autistic UK based adults.

Kanner style autism as a known form has been around for quite a long time unlike Asperger style autism which began to make its mark on the world in the nineties.

back then all of us diagnosed with the kanner type were fairly visible in impairments and were usually said to also have severe or profound learning (intellectual) disability’s as there was no good way of testing us ,this is my form of autism except it took 30 years and a lot of specialist testing to get my LD changed to mild from severe.

I hope this helps.

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