Revisiting diagnosis

It’s almost as if some people point-blank refuse to understand the condition and only want to see it in terms of a disciplinary or behavioural issue, where they constantly feel the need to “put one in one’s place” “knock someone back a peg or ten” and many similar (far ruder) things - being constantly told and reminded that one “does not understand that one is wrong” and that “one does not know nor understand the difference” between bullying/prejudice and thier particular brand of discipline, which they feel is essential to managing the condition and where any attempt to reason with such people results in being routinely screamed at to “pack it in” (which I endured for 30 years in supermarkets, on the shop floor in front of customers, especially in my last supermarket job for 17 years, with one middle aged woman manager from an ex-Millitary background, which eventually resulted in everyone at my last store constantly screaming the same things at me) yet people who have relatives with the condition and whose family work in the area of mental health, aside from any other differences should know better, so there is no real excuse for such attitudes - long before my diagnosis, it was always said to me that I “know too much” (about things that it was deemed that I should not know anything about) and “not enough” (about things I should know) - against this backdrop it is virtually impossible to be allowed to “win” with (or against) such mindsets 

What the doctor said was pretty outrageous!

I did have a reassessment after being initially diagnosed not autistic. However, my second assessment was many years later. It was over Zoom because of the pandemic.

In terms of getting an assessment, the procedure where I am is to have people who want an assessment to be screened by the charity Mencap, which basically involves being given a standard autism questionnaire. If you score above a certain level, the GP can refer you for formal assessment. If that's not available where you live, you can probably find the questionnaire or a similar one online; it might be a useful way to help prove your point.

The other thing I did was do a LOT of research on autism, online and in books, and used this to compile a big document listing all the reasons I thought I was autistic. I took this to the assessment and I think it was helpful in making my case.

Good luck!

I totally understand why it had a massive impact on you.  I totally understand why you can't forget about it.  You have my unreserved sympathy on both counts.

Please be assured that the following is not an attack or challenge on your current thinking, merely observation and opinion upon it.  I do hope you will be able to receive it in that spirit - I'm most certainly aiming for "helpful" not "elbow hole." !!

I struggle to understand "medication" aspect?  I do not believe that there are any specific medications that would apply differently (for or to you) if you have a formal diagnosis for Autism.  There is no medication for Autism.

I also worry for you slightly, if you are expecting people to react differently and/or more favourably towards you if you have received a formal diagnosis.  Moreover, I also worry for you slightly if you were not to receive the diagnosis that you obviously feel is - shall we say - highly likely.  I think people can be cruel and/or damaging unless you have some profound connection with yourself - whether diagnosed or undiagnosed.

My commentary above is predicated and informed by extensive reading on this site and other places about these matters and I can wholeheartedly recommend that you do the same.  The archive here is very extensive with many, many diverse experiential opinions.  It is irritating to navigate though!  I have found it invaluable in helping me to come to terms with - things!

I am most certainly not claiming to be an authority in any respect on any of these matters and wish you all the best in any and every event.

Kind regards.

I see what you mean. I’ve tried every day for over 2 years to forget about it but I can’t. There are very few benefits to adult diagnosis but for me the one big one is telling others. A lot of people don’t accept or even laugh at self diagnosis. Another is medication. It’s for those 2 reasons I’m pursuing this. I’ll see what my psychologist says and take it from there. It’s always slow though. 9 days until I speak to her again and I am not a patient person!  

Hello NAS72187.

So clearly, the doctor with whom you had your initial assessment was neither an elbow nor an *** specialist !

If you are talking to a psychologist at the moment, I would carry on talking to them for a while if you can.  It might be that you now simply need to exorcise that awfully inept initial assessment from your mind - I'm sure that EVERYBODY here can attest to that.  When that is done to your satisfaction, you might find that you are then simply content to self-identify.

If you are an adult, there are very few external or 3rd party "benefits" to receiving a diagnosis (but do check out the plethora of threads that address that matter in very considerable detail.)

That seems draconian, to say the least. To me, that clinical opinion seeks to rob you of your humanity.

One of the things that I was told by the therapist (in follow up emails) that did my online diagnosis was that I must not attempt to form, have/hold nor (especially) express any views nor opinions on any issue, because in all cases it was deemed that I would be “coming from a space of dysfunction”, of my not understanding in the (infinite wisdom) of “everyone else” that I was wrong (by default) on all issues because of my condition and that I should maintain total silence and only be “seen and not heard” because in her professional opinion, because of my condition, I did not understand the basic concepts of “common sense” and of “reality” - when she had reached out to others before doing my diagnosis, the replies she recieved had stated the beliefs of others was that a primary cause of my condition was insufficiently strict childhood parental discipline and serious flaws in my childhood parenting because of my parents own issues before I had been born, an observation that was also made by former employers, among many others including extended family 

The attitude is not systemic to the NHS as a whole, it is that there are too many backwaters where outdated attitudes to autism lurk, and are not effectively challenged.

If this is true about the NHS, I wonder what changes they will make to this policy or policies in the post-Covid era - will they deny services and/or support to someone because thier Covid vaccine/booster/flu shots record is not up to date and/or thier GP attendance record is not up to date? Or will they make it part of the process to update all of this before they proceed with any further services/support? 

Wow that’s hard to understand what you’ve been through. I hope things are easier for you now. 

I did the AQ50 and scored 42. I know it’s not all about what you can and can’t do. I do most things because I have to. I’m an adult and a mother. But do they take over my life and cause so much internal pain that I’m exhausted mentally and physically? Yes. 42/50 but hey, I can go for a coffee so I’m ok.  

Unknown said:

On a serious note i tried getting a diagnosis and because i can hold down a job i wasnt considered viable. 

This is one of the most discriminatory elements found in some parts of the NHS. Because you are functioning in society - i.e. not causing any trouble to neurotypicals - you cannot be autistic. What about all the trouble being autistic, and an undiagnosed autistic at that, is causing to the autistic person themselves?

Autism is not merely about being able or unable to do certain things, it is equally about the disparate cost for the autistic person of doing certain things, in anxiety, exhaustion and distress.

Can I present a seminar to 10, 50 or 100 people, yes I can, I have done so. However, unlike most neurotypicals, I would then be unable to do anything involving interactions with other people for a couple of days. That is the difference.

My advice would be to take some online autism tests. AQ10 and AQ50 (sometimes called just 'AQ') are the most commonly used by clinicians in this country, but the RAADS-R is the most definitive. They can be found here: https://embrace-autism.com/autism-tests/

If you score in the autism range it will give you more certainty about following up on a diagnosis. Test results will also give you ammunition with which to persuade your GP to give you a referral. If this doesn't work, you could try changing GP. Of course, if you have a spare £1k, you can get a private assessment, which takes much less time than the NHS and does not need a GP referral.

I’ve had a zoom assessment towards the end of Covid and I’ve flagged this up with my social worker here in the U.K. for a second face-to-face opinion assessment, having been pushed by family in Ireland into getting a diagnosis in 2019 after 30 years in supermarket retailing (20 years living in the U.K.) and after my redundancy after 17 years at age 52 - even though I was 3 years unemployed during Covid, people in my new hotel job “twigged” that I’d had the condition before I’d mentioned it to anyone, but I’d also wondered about the true motivations of those family members in Ireland who were pushing me towards getting a diagnosis, even allowing for the fact that as a child with parents who had thier own issues, I’d been sent to a residential centre for 9 months before I left primary school (held back a year in Primary school) because I could not take being bullied in school and to punish me for being bullied in school in the Catholic Ireland of the time - I’d also been living in Dublin for 3 years after I thought (wrongly) that I might be gay, then returned home to Rural Ireland for a year before moving to the U.K. in 2002 and ending up homeless for 6 months - given that most autism support is geared towards children and not adults, I’m beginning to wonder if there is any real value in adult diagnosis - because what has carried me through is my Catholic faith in which I was raised, I’m reaching out to Catholic groups for sources of support, in accordance with Catholic Social Teaching and in an Irish Catholic cultural and social context here in the U.K.