Diagnosis nightmare

I haven't even got that far yet.  I've struggled for about 5 years with the NHS to try and get me assessed.  I've spent 20-odd years struggling with anxiety, social interraction, issues, depression, and OCD, and all the time I'm just being treated for each item individually.  At one point they were blaming my home life, and I was, like, what?  Really?  Asperger's is what causes the anxiety and depression.  I don't know why they never look at the root cause of it all, just always trying to sort the symptoms.  I waited on another waiting list for 8 months to see a psychologist for it, just to receive a message from my occupational therapist saying they didn't feel they needed to see me. So, when back to the doctor, again!, wanting another appointment, and I got a letter saying I have been given an apointment with a dietician.  Absolutely no idea why...back I go again next week!

I was advised by my local One Stop Shop to check out SWAN:

www.facebook.com/

www.autismnetworkscotland.org.uk/.../

It's purely for helping out females on the spectrum and they are helping debunk the myths on females on the autism spectrum (I'm just assuming you are a female by the way...)  You can maybe get in touch with them and see what they can do to help.  They shared a story from the daily mail today where a woman, Caroline Hearst, finally got diagnosed at the age of 55.  It had been missed for that long.

Personally, I just spend my time at my local One Stop Shop because they understand me better than any NHS or paid 'professional' can do.  

Thanks. This has been very helpful. I scored 38 on the online test but from your experiences there's just no way I would get a diagnosis. I'm 66 years old and have come a long way to behaving 'normally'. I make good eye contact, can be witty and really like people. The problem is I get over-stimulated in company and tend to rant. I find it very hard to stop, even when I know that I'm raving, because what I'm saying is usually extremely interesting – to me. Hahaha! I also have accepted long ago that I'm a bit weird, so I want to just be who I am.  Trying to just 'mild down' and exchange meaningless pleasantries doesn't hold much appeal. Why bother? (Can't do it anyway, to be honest.) But it has resulted in losing contact with two brothers and two daughters (the latter in the process of repair, thank God.) But it seems that none of this would add up to a diagnosis that I really do need because I don't last very long in shared housing but can't afford my own place. 

I guess I'll find out.

Thanks. This has been very helpful. I scored 38 on the online test but from your experiences there's just no way I would get a diagnosis. I'm 66 years old and have come a long way to behaving 'normally'. I make good eye contact, can be witty and really like people. The problem is I get over-stimulated in company and tend to rant. I find it very hard to stop, even when I know that I'm raving, because what I'm saying is usually extremely interesting – to me. Hahaha! I also have accepted long ago that I'm a bit weird, so I want to just be who I am.  Trying to just 'mild down' and exchange meaningless pleasantries doesn't hold much appeal. Why bother? But it has resulted in losing with two brothers and two daughters (the latter in the process of repair, thank God.) But it seems that none of this would add up to a diagnosis that I really do need because I don't last very long in shared housing but can't afford my own place. 

I guess I'll find out.

The key to adult diagnosis is insistance and repition. The willingness to "make more of a fuss" than is socially normal is considered an accurate diagnostic marker in adult AS assesment. Also, make no effort to normalise your posture/eye movements...let them see the symptoms clearly. 

Also it helps if you have availiable documentry evidence of childhood integration difficulties: letters/reports from school work nicely, if you dont have any you might contact your old schools and ask if they retain copys.

If all else fails, get a private diagnosis. The NHS is v reluctant to diagnose for both finacial and socio-political reasons...

Maaya, adult diagnosis is very difficult to get and I suppose because much of what can be done is done at an early age it becomes too late as an adult.

There is no medical test so it's purely behavioural observation and in my case we had a daughter with obvious autism, you know flapping arms the whole deal. Still took well over a decade to get a diagnosis but that was NHS mind.

If you have enough money I have heard you can buy anything from a Doctor...

A gluten and casein free diet is reported to be helpful for some people.

It sounds as though he may have meant that you have significant, but not disabling, traits. Have you tried the free online AQ test?

He did say I had autistic traits but I thought everyone has those and isnt everyone supposed to be on the spectrum somewhere?  

It may be that the consultant was erring on the side of thinking that you weren't severely affected enough to warrant a diagnosis. You could still think of yourself as being on the spectrum but not so far along as to benefit from specific treatment.

He may have been a bit stricter as he may have to justify his diagnosis to the insurers who might not want to pick up a bill for treatment that may not be essential?

Regardless of the diagnosis it sounds as though you could benefit from stopping blaming yourself for some things. Are there some things that you regret? Is it time to move on and let bygones be bygones?

Hi

Thanks for the comment, the assessment was done by a consultant who does specialise in autism and is involved in research so I have no doubt that he is knowledgeable. Its interesting that you say it should not be a black and white test because that was certainly my experience.   I think there was some difficulty because there could be other explanations for my issues ie, my father drank heavily and this made it difficult to differentially diagnose.  It was paid for by our employment health insurance.  

I was thinking that if I had the diagnosis it would help me understand why I have had so many difficulties and that perhaps they werent my fault.

Hi

Thanks for your reply, its interesting that you found it hard to remember, I was wondering if my mum would remember if any of my behaviour was unusual..  I will try and see if there is another assessment that relies less on my mothers memory!  I think there is one called DISCO?  Does anyone know about this one?

Hi Maaya,

Was the psychiatrist a specialist in autism disorders or a general psychiatrist? Why do you need a diagnosis? Who is paying for the private diagnosis (i.e. is it your own money or your employers or health insurance?)

I don't understand why they would rely very heavily on the unreliable witness observations of your 72 year old mother or your husband. Neither will have standardised responses to the questions. These assessments should be used as guidelines in the diagnosis process and should not be used as black and white tests with cutoff points that separate a diagnosis from an all clear.

Hi Maaya,

I have had a similar problem but in reverse with my younger son, who at home quite clearly shows signs of ASD/Aspergers. We scored very highly on the interview part ie what I have seen him doing over t his 11 years, but "passed "the face to face 30 minute assesment. I know what I'm talking about as his older brother was only eventually diagnosed with Asperger's when his difficulties became more pronounced and public with depression and anxiety with the transition to senior school, 2 years ago.

I can really understand your frustration especially as a lot of the information for the diagnosis is gathered from the parents. It was hard enough for me to remember accurately, my son is now 14 years, and they ask a lot of questions about infancy, so I really wonder about the reliability of your mother's recall many years later, especially if she doesn't want to accept the possibility of diagnosis. The other thing is that over 30% of people with ASD have concurrent "mental health " diagnoses eg anxiety and depression, resulting from their difficulty from ASD in fitting in socially etc.

I have requested a second opinion, and would suggest you do the same, if you feel it would benefit you to have a definate diagnosis. Unfortunately our second opinion didn't turn out to be the broader face to face assesment with speech and language assesment etc, just repeating the 30 minute face to face ADOS he had passed last time. Guess what he passed again! I would suggest you get more info about where to get a second opinion from, one that will focus more on your current difficulties etc, rather than your mum's memory. Hope that helps, Serena