Adult autism assessment - anyone been through it?

Diagnosed 6 years ago by mental health nurse/counsellor. Was declined for full assessment due to funding, this was understandable, I’d rather kids go tested than me. Was then told Aspergers (which now would just be classed as on spectrum).

(a) IMHO there is no such thing as "a neurotypical". We are who we are and we need to learn to love ourselves and live with ourselves

(b) colour me surprised that a private clinic wants you to dig into your pocket for an assessment.

Would investing in psychotherapy instead allow you to become more comfortable with your traits, diagnosed or not.

colour me surprised that a private clinic wants you to dig into your pocket for an assessment

Yes I had a healthy scepticism about that too and also discussed concerns about "buying a diagnosis" with them. They're a well established and accredited clinic that also provides NHS services so I think their clinical standards are vetted and they have various checks and balances in the process to make sure they're not pushing people down a particular path with no evidence to back that up.

54 when diagnosed earlier this year on the back of a meltdown which I had assumed was my run of the mill depression. The short story is the therapist referred me to one of her colleagues who specialises in autism. I did not opt for the full formal option but had a more informal diagnosis. From memory I think the cost was about £6/700. Having read lots this year I am happy that it is correct. It has been 8 months of getting to know what it means for me. It is a spectrum with some common themes. A phrase I like is that once you have met one autistic person that means you have met one autistic person.

I'd say this is a case of buyer beware.

While a diagnosis may answer a host of questions, it will undoubtedly pose a great many more.

Currently at the age you are you know who you are, and are pretty much comfortable in your skin.

Being diagnosed could leave you then questioning who you are really. Certainly not the person you originally thought, and that can lead to a deep depression and loss of personality.

I am currently waiting for an assessment myself. Started the process with my gp middle of August who passed me on to the local assessment unit (suffolk), who in turn have passed me over to the diagnostic team. Up to a 2 year wait for the next stage though.

https://www.bbc.co.uk/sounds/play/b03wp5j4?partner=uk.co.bbc&origin=share-mobile

Currently at the age you are you know who you are, and are pretty much comfortable in your skin.

That is quite an assumption 😉

But thanks for everything so far everyone.

That is quite an assumption

It is, but i dont mean it in any negative sense or all encompassing point of view.

You are (insert name here) you are (X) age, you have done this, and done that, and for the past 50 odd years you haven't been in a state of deep depression questioning your sanity and place in the almighty being of the world. In short you get on with living, drinking, f*****g and all. You arent living in an existential day to day nightmare. Sure you've questioned your own behaviours, your relationships to others, and might even looked for insight in past endeavors and relationships from school to work life.

So you know yourself. You are (insert name here)

A diagnosis can leave you questioning that. Sure thats the reason X reacted to me in 19whatever, or thats the reason for how you got on at school, or work etc etc. But the diagnosis can leave you unsure of who you really are. The person you grew up with , or someone else.

I had the full diagnosis in my mid 30's, im now in my mid 50's ad it taken me those 20 years to come to terms with it, and without a doubt it left me questioning my sanity. Even now I've only an inkling of who I am really. But certainly not the person i though i was.

You can end up immersing yourself in the role. Trying to understand the new you, and you can start to make excuses for yourself, for your behaviour because the direction you thought you were living, has now taken a new branch.

You are the person you originally thought you were, only being diagnosed has only answered the questions of the past, and in reality has changed nothing. At least thats what I tell myself 😆

I came to the realisation I was somewhere on the autism spectrum a few years back. I decided not to pursue an official diagnosis because of the time involved and a thought of what benefit would it actually bring to me.
It was watching the channel 4 autism season that helped me realise where I probably was, and also how many in the population were likely to be on the spectrum (over 10%).
A few of my friends know and could not give a shit.

To what ends? If you find some techniques suggested for autistic people help you in whatever situation then use them. A diagnosis should be used not to excuse behaviour but as a means to gain suggestions as to mens to control and manage your self. You don't need a diagnosis to do that.

In a more general sense it's important to learn to step outside ones self and view our behaviour in different situations. We have the ultimate advantage here in that we are the only ones who have see all of our behaviour in all the situations we have experienced. To do this requires ourselves to remove the justifications that we use to protect our ego. This allows us to help see the many persona's we present and draw conclusions on what triggers these persona's. If we can help identify the triggers we can sense early when these persona's are being triggered and help gain control. This is a forever project that is never complete.

I did not opt for the full formal option but had a more informal diagnosis. From memory I think the cost was about £6/700

Ouch, if that's the cost of the informal assessment, how much is a full one?! I've thought about it myself but came to the conclusion although it would sort of provide me with an answer there's no magic pill I can take to address it and at this point I'm not sure I could be bothered with therapy.

Diagnosed 6 years ago by mental health nurse/counsellor

Is that an official diagnosis? I didn't know RMN's could diagnose this in the UK. (Ex UK RMN and now Aus Clinical Psych Nurse and AMHP)

No not fully official, for that I would’ve had to have the funding for a full on assessment which I didn’t qualify for, which is understandable.

I find it all a bit strange how we need to label everything these days. Especially when it won't really change anything.

I agree that there needs to be an acceptance of people's differing personality types, which in my experience is what generally happens in society.

We can all try to be nicer, more compassionate and just more rounded individuals. But it's the little differences and foibles in all our personalities that make us who we are.

Good luck if it helps you but try not to be too disappointed if you don't receive the diagnosis you expect. Or even if you do receive the diagnosis but nothing really changes in your life.

Nice anecdote of being diagnosed as an adult here.

https://www.autismspeaks.org/life-spectrum/my-story-being-diagnosed-autism-adult

I still have mixed feelings about how a diagnosis as an adult can have any meaningful positive effect on an adults life. It obviously means a lot to some people.

Hope you find the answers you're looking for.

My wife has labelled me autistic, however the diagnostic process was very expensive and slow, mainly consisting of being married to her for over 10 years and still ongoing....

NB She works in the automotive sector, but is apparently qualified to offer such a diagnosis...

My wife has labelled me autistic,

My wife told me I am artistic too!

Currently at the age you are you know who you are, and are pretty much comfortable in your skin.

+1

Although I realise this won't apply to everyone, but personally one of the main benefits of being older is coming to terms with who you are, totally accepting it and not caring in the slightest what anyone else thinks, except for possibly the wife, who reminds me of my many faults on a daily basis ;-).

Not myself but I’ve been through it (twice) with my adult daughter. First using the ADOS test/protocol which determined negative but was during a period of breakdown when communication and recollection weren’t good and then recently repeated using ADI-R when a positive diagnosis was confirmed. Both times the interviews conducted by RMN with additional quals, supervised by consultants, and decisions technically made by the multi disciplinary team (we didn’t meet/attend) rather than the RMN. Existing co morbidity includes major depressive disorder, severe anxiety, sensory overstimulation issues and selective mutism, and ADHD was additionally identified during the process. The diagnosis will certainly inform and shape ongoing therapies and treatment.

I still have mixed feelings about how a diagnosis as an adult can have any meaningful positive effect on an adults life. It obviously means a lot to some people.

A mate (early 50s) has just been given his diagnosis late last year.
Now he knows what's wrong, he can take action to make sure he doesn't put himself in situations that trigger him.
His employer now have to work around making sure his disability is catered for, instead of the last few places that have either fired, bullied or constructively dismissed him for being odd or "disruptive". (One employer is currently being taken through the courts, and is looking likely to lose, mainly as they keep failing to turn up, because its "all made up bollocks".)
He's also now learning how to deal with some of the issues around it, because he knows why he is like he is. Rather than what he's been doing the last 35 years, which has either been looking himself away until he's almost suicidal, or giving into the urges and spending a week in Amsterdam completely off his head. His parents (completely NC for a good while) don't believe in mental illness, which explains a lot.

Another friend is at the beginning of the process, she's been given a sort of preliminary result, that says, yes. There is a very high probability that she is, but we can't do anymore as we haven't got the money or resource right now. Which, TBH, she seem's happy with, because at least she knows she *isn't* losing her mind. And she's got enough on her plate right now.

It's an interesting one - someone very close to me was in a similar situation. She felt a positive diagnosis would have explained a lot. She eventually had 2 or 3 sessions with a specialist counsellor/therapist to discuss it and get a preliminary assessment. The counsellor said she had enough 'symptoms' to justify going for full tests - but it was very expensive and, ultimately, would put her well at the 'mild' end of the spectrum.

So she decided not to do it, as she felt either outcome (slightly ASD or not quite ASD) wouldn't change much. With her normal counsellor, she's tackling symptoms and finding coping strategies - there's the idea of a 'highly sensitive person' (which does have a hint of woo, but is a pretty accurate descriptor here) which arguably tops out just shy of actual ASD. And so in terms of 'how go get through a day without becoming completely overwhelmed', the coping strategies are similar. And as the post above notes, just being told you're not a ****ing weirdo for being terrified of mayonnaise is helpful in terms of giving you a foothold. And WFH has been an absolute boon for getting a bit more control of day to day triggers.

Good luck. I know it's not fun when everyone else seems to handle these apparently simple, everyday tasks without even thinking about it, but they're almost titanically stressful to you.

If you find some techniques suggested for autistic people help you in whatever situation then use them

This, very much this, and this again.

Will a label help you? Not so much.

I would answer differently if you were 10 years old (that'd be my eldest then), not late 50s, because there is an age where it is more about helping other people in your world deal with you better, as opposed to you doing some things differently, i.e. proactively dealing with the world in a manner that works better for you.

I'm in a similar position.
Early / mid 50s.
I'm waiting for formal assessment of autism and ADHD.
I'm fairly certain that I am somewhere in it.
My son has a formal diagnosis and it has been helpful through his education.
I'm not entirely sure of the value of a diagnosis for me - I had a conversation about 12 years ago with my gp and never progressed it formally.

I do want to better understand myself though. I'm going through a really tricky patch at the moment, which I think is exacerbated by the ASD tendencies I have.

it’s not fun when everyone else seems to handle these apparently simple, everyday tasks without even thinking about it, but they’re almost titanically stressful to you.

Very much this.

MrsF was diagnosed about 18th months ago. She wasn't sure if she wanted to go through the process. But it has validated the reasons why some things stress / tire her out and why she needs lots of recovery time. Previously she's suffered with feelings of uselessness 'why can't I do that - everyone else can', the diagnosis helped to combat those feelings with the knowledge that her brain is wired up differently to some peoples.

Good luck

footflaps
Full Member
My wife has labelled me autistic, however the diagnostic process was very expensive and slow, mainly consisting of being married to her for over 10 years and still ongoing….

NB She works in the automotive sector, but is apparently qualified to offer such a diagnosis

I heard a comedian on R4 say the other day 'Told my wife I had been diagnosed as ADHD, and she said 'thank **** for that, I thought you were bi-polar'...

My kids (twin 11 year old boys) have had various private assessments and its been invaluable for us to help manage them better, and to help them in their education. Funny thing is each twin is the spitting image and mannerisms as me and the wife. The one who is just like me had just an Educational psychology Assessment and it has really helped him (at school) and me (understand him and myself). My other son has had a lot of assessments for court hearings etc v getting him to the right school setting.

I would say do it. I am surrounded by parents burying their heads in the sand with their kids and then wondered why the wheels fell off going from a little Primary school to massive Comp..

I also know someone in their 40's had an assessment paid by work. She now understands herself a lot more.

My wife works for an enormous global IT reseller and she is now part of a internal group looking at neurodiversity as a competitive advantage for their business.

(a) IMHO there is no such thing as “a neurotypical”. We are who we are and we need to learn to love ourselves and live with ourselves

first bit, maybe, but in the same vein, no such thing as normal either, but very few accept that

Second bit, fine. but it doesn't help 'us' deal with the rest of the arseholes out there, because typically, when you behave in an unexpected or unusual way, because you've learned that certain things help you love and live with yourself, they will poke you with a stick,  and a 14 page explanation on how you've arrived at the conclusions that the mannerisms you have are how you've managed to live amongst the animals for so long isn't going to cut it when you've been poked until you're mute. a 'label' helps.

NHS diagnosticians IME are looking for problem cases to assist. which is fair enough. For most who have managed to get through the world by masking, but have reached a point where it's exhausting t get out of bed, a private diagnosis may help ease the 'rationaling' to others and help you make peace with some of the peculiarities you have.

After a period of reflecting on the past and mourning the poor decisions you've made now you know a lot is due to rigid thinking and a lot of external poking from 'neurotypicals'. (maybe just me TBH)

Thanks for all of your input folks. This place can be great at times. Overall its kinda supported my thoughts that there's little benefit for me in getting a full diagnosi. I've become more accepting of my differences lately and as a result am more vocal about them rather than masking, suffering and then needing to recover.

Since my diagnosis I have found I understand a load of stuff about me much better through time spent reading and research. A diagnosis was not a prerequisite for that but it had not occurred to me before that I might be on the spectrum, I just felt I didn't fit and thought that was my reality. The greater knowledge helps me and those I have shared my condition with to deal with me as I am not as a neurotypical person. That has been very beneficial for me.i am pleased to have it confirmed by a professional but people who suspect they are on the spectrum can look into it themselves and work out some strategies for making their lives less difficult which is not to say it will all be a walk in the park. Post diagnosis I was happy to have some understanding but subsequently felt a bit down which I think is pretty common. Don't forget there is more to you than just your autism.

I'm thinking of going for an ADD/ADHD diagnosis but wouldn't be surprised if it comes back as autism.

Always knew something was "different" even from an early age. I think lockdown has magnified a lot of the worst elements so I'd like to know for sure, what, if anything, I'm dealing with

Following the Paddy Mcguiness program about his families autism, my wife found the online autism test from the university that was featured. I came out as autistic and heading towards Asperger’s. I’ve debated about investigating further, but for me, I don’t see the benefits of doing so. It may explain things a bit more, but I don’t feel that I’m suffering or would benefit from a better diagnosis or support.
it has made sense of many smaller aspects of my life.

I came to the conclusion I had strong autistic traits in my 50s. After a fair bit of thought I didn't follow up with official diagnosis for a series of reasons: I have my coping strategies in place. A diagnosis won't change anything for me. I don't need a diagnosis to access services etc and the expertise is in short supply - your more severely affected people need that expertise

Following the Paddy Mcguiness program about his families autism, my wife found the online autism test from the university that was featured. I came out as autistic and heading towards Asperger’s.

The online test is radically different from a full diagnosis with a medical professional immersed and specializing in the autistic spectrum.

with the online it is you doing the answering, and theres a tendency to agree with kind of obviously flawed questioning. That test is a dozen or so question, as opposed to the proper thing with is like a small book, covering a vast range of personality traits.

With the proper diagnosis, they are talking to your parents, your siblings, school reports, doctors, relationships etc and looking at your medical history over the course of your life.

I had an NHS assessment in my mid forties. I'm don't know if it's the same assessment format for all the trust's. But mine was an initial assessment by a trained health care professional. The HCP then interviewed someone who knew me as a child. I was then meant to see somebody who was more qualified for a second assessment. A psychologist, I think. But by the time the assessment came around (18 months). Due to budget cuts and a lack of staff my second assessment was done by the first HCP.

I was told that I couldn't be assessed without the HCP meeting with someone who knew me from my early childhood. I think that makes it a bit pointless. I couldn't get a medical diagnosis without the opinion and memory's of a lay person. Which for me was someone who was in their sixties. Being asked to remember things from 35-40 years ago. That person in my case is also highly likely on the autistic spectrum as well and more severe than me.

If I read anything about Asperger traits it matches me exactly. But I was diagnosed as 'normal'. My traits were put down to my upbringing. Or lack of it. Who knows? It's easily argued either way until they develop a proper medical test for adults.

Will a diagnosis be of any use to you? Only you can answer that. Personally I think it's only of any real use if you're diagnosed as a child. That way if you have good parents you can learn that the way you see the world and come across in it is different than others. Then hopefully you have a better chance of fitting in and having a better quality of life.

I initially thought a diagnosis would help. But the vast majority of people don't care if there's a reason behind your different behaviour. They just care about the behaviour itself.

I have aspergers...

I choose to have aspergers apparently..

Diagnosed by my wife initially, then a qualified person.

I am no longer fit for purpose, however i make money and fix things but i am slowly becoming obsolete.

I was happier when i was ignorant of my condition. However i do understand myself which is not necessarily a good thing as i have been living an unknown lie all my adult life - i was masking on an epic level.

I was happier when i was ignorant of my condition.

This is what i was saying in my initial post. It can lead to you questioning your everyday existence, which is not necessarily a good thing.

As they say - Ignorance is bliss.

I was told that I couldn’t be assessed without the HCP meeting with someone who knew me from my early childhood. I think that makes it a bit pointless.

Its not really because you're thinking about this from a lay point of view, without knowing the pointers that show there were autistic traits.

This is part of the diagnosis. Trying to explain this. Its like someone does something that seems normal to everyone, but if you presented that to a specialist that knows what it means, his point of view will be far different, because he knows and understands the traits or symptoms to look for.

Its a bit like people who end up in court for doing something really bad. They undergo a psychiatric evaluation. The evaluation isnt a set of questions gleaned of the internet, but diagnostic tool gathered from information and case studies across decades with hundreds or thousands of patients.

So they know what symptoms they are looking for. And while it might mean nothing to you or I or any member of the untrained public. To the professional it shows traits they understand from this that point to the autistic spectrum, or ADHD or whatever showing strongly enough to provide a link they can rule on.

I will say here what my GP colleague says (he is a specialist GPWSI in ASD/ADHD) and works locally with some very severely handicapped children.

Get yourself tested. There are many other disorders that are equally disabling and upsetting that are not autism spectrum disorders and treatment are available and (crucially) different. Lots of eating disorders, social anxiety disorders, OCD, language comprehension disorders, mood disorders or hypersensitivity share similar symptoms and can if self-diagnosed via some online tests can suggest that you have autism, when infect, you may have a different condition.

The differences that you may feel are a weakness are often just facets of a package that other people perceive well.

If as you say the diagnosis is purely for you and you've found cutting yourself some slack is beneficial, why not just continue to do that? See how it goes for 6 months or so then re-evaluate.

Over the years, I've met many bright folk who overthink things. I'm not sure if you're one of the bright ones though, I've seen you on a boat 😉🤣👍

For me personally i have found the diagnosis in my late 50s was somewhat challenging.

Its not about questioning things in your life as such, its the realisation that you will **** up and if you think a few "strategies" will manage it then best of luck.

I am hard wired... its not a choice, it can't be fixed, as above i am not fit for purpose (Husband, Father etc)

What o considerd important in life mostly turned out to be little more than "administration" of family life.

If you think your other half will tolerate an Aspie you had better sit down and have a very honest conversation.

I have ruined my wifes life and i have no capacity to address that.

On 'coping strategies'. My friend, in discussion with a counsellor, identified various behavioural traits that had developed in childhood as coping strategies, that had become embedded over the years. But by understanding that there was potentially a 'root cause', they could look again, like, "This was how an 8 year old coped with stuff she didn't understand, but you still do it now. Is it still the best way to deal with the feeling of XYZ? Is there a better way now you're 45?"

Which freed her up a lot to think about things that she might have considered as just integral to her personality (like a minor eating disorder for example), but perhaps were open to changing after all.

@ thepurist

Feel you're a bit weird ??
After some 13 years on this forum my conclusion is most of the other members fit that bill 😉

Actually I'd go so far to suggest some are downright fruitcakes.

Actually I’d go so far to suggest some are downright fruitcakes.

There are only two types of people, those who are fed up and those who know they are fed up....

I thought about having the assessment but in the end decided against. My pyschiatrist thought I was robably neuro-diverse, but felt that a formal diagnosis wouldn't change anything. It's not as if they can prescribe anything to help if you are diagnosed and it can be a long and/or expensive route to take.