Hoffmann Foundation for Autism
1,543 members301 posts

Adult asperger access to diagnosis nightmare!

I am so fustrated i cant sleep, throughout my adult life i have asked for a formal diagnosis of aspergers several times, as the autism act has once again been strengthened I thought i would try again with my gp and to my fustration I have referred to the mental health access team to assess what services i need to manage my current difficulties to regain wellbeing and maintain it and to develop a mental health care plan that i dont currently need....the difficulty i have the same old problem I have always faced each time i have requested help with formal diagnosis despite the lack of assistance i have developed adequate coping stratagies, I work and I am not known to mental health services as I do not have a learning disability and i am not suicidal and I needed their help 45 years ago, the help I need now is access to diagnosis as sometimes in employment and organisation it would be easer to explain to others the contrast that is sometimes apparent where ability and organisation seem unmatched untill i get into a groove particullsally when things or processes change, and with a diagnosis i feel i would be better understood and would better understand myself this important to me, I recognised that my idiosyncrasies mirrored Aspergers when my son was going through his diagnosis he was me, I recognised the similararities in both childhood and adulthood ..and it all made sense, no wonder people like me give up when you get a leaflet suggesting you might be a risk to others and the purpose is to regain wellbeing and maintain it, I am not mentally ill and dont need a mental health care plan. I have read through the statutory guidance re the implementation of the autism act and the 2016 progress report all that suggest there MUST be a clear diagnostic pathway infact a duty to give

information about the assessment process to the individual being assessed; I have told them I need to research in detail regarding this and i have established that the access team are not involved with diagnosis, so where is the diagnositc process?? Doncaster dont seem to be able to offer a clear pathway and cannot offer any written documentation #FUSTRATED

3 Replies

Although Asbergers is a Neurodelevopmental illness it is assessed by Mental Health Services. The other issue is the questions they ask in my opinion don't give an accurate

Account of the issues that folks really have in the syndrome. My middle son took till he was 18 and seen by adult services that he was diagnosed. Children's mental health services totally failed him. The youngest was diagnosed at 17 by CAMHS but they failed to recognise the ADHD when he was young, he now has ADD. I am in the process of trying to get them both diagnosed with PAthological Demand Avoidance Syndrome which is horrendous.

If your Asbergers has not been diagnosed you have two choices. Ask your GP for a referral elsewhere or unfortunately go private at considerable expense. Sleeping is a major factor to folks with Asbergers, eating, one of mine is an exceptionally picky eater and as you have mentioned your preference of routines.If your son has been diagnosed this should automatically give them evidence. I have worked out that my husband had Asbergers, my dad had Dyslexia.

I am the same as you, I recognised symptoms in myself and have been diagnosed with Dyslexia, dyspraxia, dyscalculia and under assesment for ADD. I am 59 and never really understood my issues over the years.

Each case of Asbergers is like a fingerprint, it is unique to that person. I know how frustrating it all seems. Unfortunately by our experience and so many more the process is extreme frustrating .

I hope your GP can assist you in finding someone who really understands Asbergers so you can explain your issues to others and get the support you need.

Why Neurolgists are not involved is frustrating. If the issues are not recognised then it's the anxiety which is the main problem in Asbergers then it becomes a Mental Health Problem. I know it seems senseless but that's the only way to obtain a diagnosis. You could contact the nearest place which is responsible for Psychiatrists , mine would be Edinburgh, not sure for yourself, and ask for a recommendation who specifically has experience in Asbergers. It makes a huge difference.

Good Luck.


Thanks for the reply i will lobby my CCG if i have to, I am not giving up this time I hide in my knowledge and intellect so socially so long as I pick a few practiced areas of interest I can cope, and to reduce my stress levels in social situations I practice conversations I might have …

I have a very understanding husband who is happy to motorhome so I can

take a bit of ‘home’ away, and is happy to go to more remote places (not on sites) to be more people free so I can refresh my batteries.( Leaving home creates OCD behaviors that are not there the rest of the time) I work in an autonomous role with a strong focus on clinical and factual information, where I am in control of the meetings and so well read on therapy can have a excellent intellectual meeting with my customers at all levels they in return have always shown great appreciation of my clinical and practical knowledge.

Those who know me well, have little doubt that me and my son share the same qualities and have turned to me for help in difficult times to tap into my ability to research and solve complex problems …my friend used say ‘call Claire in the unlikely event she doesn’t know, give her half an hour and she will have an answer for you.

I am happiest buried in factual information and research

I have no problem with eye contact, but I am very literal, (sometimes brutally so I am told) my husband has explained more times enough in conversations people who complain are often not looking for a practical well thought out solution which I can’t help but give, I don’t always recognise when people are bored of lost in the level of detail I may have given, and I don’t know how to do small talk.

Here is the BUT and the WHY, My ability to manage my anxiety and functionability is becoming more difficult, but I hide it well, I don’t know if it is an age thing or situational, I have been made redundant 3 times in the last 5 years so have had the challenges of getting to feel comfortable with new people with different expectations, the training is fine as I excel far an above expectation ..my fave place to hide, but it does mean I have been in constant flux, which makes me feel pressured.

A Diagnosis would help explain the unusual void between my high intellectual ability and my coping and organisation deficits ..i do get there but sometimes not in the expected timescales. its so exhausting to keep fighting for what under the new statutes should be a right!!!!!!

This sort of frustration stops me from sleeping as it puts my anxiety through the roof as i know i am going to have to prepare for a fight I have given up in the past

1 like

I found since I was 40 it's been a downhill slow detoriation . I thought I had Alzimers , forgetting PIN numbers , telephone numbers, not remembering things. Another trait you show is your determination to find answers, not giving up.

One of mine has good eye contact, the other poor, that is not an indicator of Asbergers. The pendatic speech, bluntness, the list goes on forever.

The issue in Asbergers is Predicting what happens next, not following through.

Often the comorbid issues are another clue, epilepsy, Tourette's, dyslexia , dyspraxia and so forth. You need a family history, go back to grandparents, even if they were not diagnosed symptoms of any of the issues.

I was lucky enough to have both mine and my dads school reports. My main issue was maths, could never understand algebra, still can't. Until I was tested never realised I had all these issues.

You can claim PIP without a diagnosis, although it's better if you have one, and the other thing I found out that I could get a bus pass for my son without the diagnosis as long as certain specialists signed it, because it helped his situation, the anxiety and getting out and meeting folks. Hidden on Council website.

I am in the process of battling to get a PDA diagnosis as well as their Asbergers. Only three places in England I believe will diagnosis privately at £3,000 each. It's not recognised by some many folks.

There is an endemic out there of failed cases.


Not sure if this may help you, but this group helps folk who are diagnosed and not diagnosed.

They hopefully with their experience has a good few suggestions for you. My geography ain't brilliant but tried googling Doncaster and not a lot came up apart from like everywhere they need more staff.

Keep going, I am sure you will get the answers you desperately need.


You may also like...