Autism assessment.................eeek !!

[Glitterati]

I hope this is OK to write here, but although it's probably 50 years too late, I've finally booked myself into my local GP for the assessment process to start.

The bad news, is that apparently NHS waiting lists may take years to get through, so I'm already planning I may have to start saving for a private assessment. It seems £2500+ is the norm for that and which is no small sum of money to me, so expect to see my various items heading towards the 'For Sale' forum in the coming weeks !

I've already done the various online tests etc and all are coming out in the 90% confirmatory categories, so it already looks like a done deal really. Sure, we all love a bit of self-diagnosis and mine seems to be heading towards the Asperger's end of things (a term which no longer exists apparently), but it would certainly explain the very poor social and life skills, numerous job losses and very limited friendships made over the years. I'm also now totally sure that 'autistic burnout' is a thing and not ever to be confused with depression.

But I think my question is, has anyone on here maybe already been for an assessment ? Was it worth it, did it change your life finding out you may be on the spectrum..............or was it one of those 'I think I always knew moments and now I have a certificate to prove it', but jeez I'm £2k lighter now as well !

At this early stage, it's been reams and reams and hours of hours of background reading and YouTube videos for me researching everything I can find (as you would expect !). But at 64 and essentially working on my own, I'm starting to wonder if an assessment is maybe nothing more than just for peace of mind (myself and family), as I definitely wouldn't want to clog up any of the valuable support pathways afterwards that could be used for the much younger folk coming through and who still have their lives in front of them. But do I regret the last 40-50 years not knowing, that feeling of not fitting in and the huge hit on happiness, you betcha !

I would be so grateful if anyone may have some feedback, it really would help.

[Dave+63]

I’m now 61 and my life experience mirrors yours in a lot of ways.

Both my daughter (very similar to me and already diagnosed) and my SIL (foster carer and social worker) have both said that I am autistic. Online tests agree too but it’s a while since I’ve done one and can’t remember the actual results.

Having said all that, I really don’t feel that an official diagnosis is even worth bothering about and I certainly wouldn’t be considering spending £2k plus on it.

I am who I am and a piece of paper isn’t going to change anything.

[TaketheCannoli]

Maybe ask yourself why you want or need the diagnosis. You've gotten to this stage of life without knowing and have obviously recognised certain traits in yourself and created coping strategies for them. What will having the badge give you?

[bloater]

Look at right to choose, using a private service to get the diagnosis covered by the NHS.
Both my kids are autistic one went the NHS route and the other via right to choose.
I am currently waiting on an ADHD assessment for myself, never considered it until a couple if years ago, when doing work training I was sat thinking tick tick tick as they went down the list.
In hindsight my symptoms have got worse since I literally burnt myself out on a project and developed a procrastination paralysis and still cant bring myself to finish the last couple of bits.
However whilst I await my diagnosis I am acting as if I have it, and making adjustments based on that which make things easier for me and those around me.

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[Stilgoe1972]

As said above why do you need to know this far into life ? If you see the classic signs then step away sometimes and make allowances for it in the way you think about things and interact. I can’t see any meds changing anything now or a special certificate. Good luck anyway:)

[Dave+63]

Look at right to choose, using a private service to get the diagnosis covered by the NHS.
Both my kids are autistic one went the NHS route and the other via right to choose.
I am currently waiting on an ADHD assessment for myself, never considered it until a couple if years ago, when doing work training I was sat thinking tick tick tick as they went down the list.
In hindsight my symptoms have got worse since I literally burnt myself out on a project and developed a procrastination paralysis and still cant bring myself to finish the last couple of bits.
However whilst I await my diagnosis I am acting as if I have it, and making adjustments based on that which make things easier for me and those around me.

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Out of interest only, can I ask why you felt the need for an assessment?

[higham5]

My wife was a special education needs coordinator working for an Educational Psychologist company. All the assessments they did on kids were to assist the parents and the teachers in providing an appropriate setting and tools to allow the children progress through schools. At mid 60’s any accommodation in your settings is determined by you and your close relationships.

As Dave says if you have done on line tests and scored a 90% confidence on you being on the spectrum then £2.5k is a very expensive way to confirm the last 10%.

My local library is full of self help books for a variety of spectrum disorders, this probably concurs with the 100’s of hours you have invested already. My suggestion would be to reflect ( as you are already doing) on your last 40 years and ask “ how could I have acted differently “.

Our grandson is certainly in Aspergers territory and school have introduced a number of adaptations ,currently home life for my daughter is very challenging. Her husband is almost certainly on the spectrum and yet finds it very difficult to relate to his son’s behaviour. Its certainly a complex condition that effects others equally as yourself.

Good luck with your journey, Im sure others will input with more focused advice.

Steve

[stooo]

Maybe ask yourself why you want or need the diagnosis. You've gotten to this stage of life without knowing and have obviously recognised certain traits in yourself and created coping strategies for them. What will having the badge give you?

This.

My wife has a friend who got given an ADHD diagnosis in her late 50’s. Done privately.

She does not work, has and always has had cleaners, gardeners, the lot.

I have absolutely no idea how this diagnosis will change anything for her and therefore why it was pursued.

It feels like having an allergy to lion meat and letting the waiter know you have an allergy to lion meat when asked about allergys.

[bloater]

I went down the assessment route, as hindsight is a wonderful thing, and a few life choices could well be put down to ADHD, my current employer is really good with staff from all walks of life but are really aware of neuro divergent people, a diagnosis opens up a lot of support at work, some of which I can access as I am under the suspected of banner.


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[monogroover]

This.

My wife has a friend who got given an ADHD diagnosis in her late 50’s. Done privately.

She does not work, has and always has had cleaners, gardeners, the lot.

I have absolutely no idea how this diagnosis will change anything for her and therefore why it was pursued.

It feels like having an allergy to lion meat and letting the waiter know you have an allergy to lion meat when asked about allergys.

I think your metaphor is a bit off the mark, because ADHD affects a lot more aspects of everyday life than cleaning, gardening and other housework. What it could change, possibly, is her peace of mind. Just having a plausible explanation for "that's why I don't fit in", "that's why I don't cope well in this or that situation". Potentially it could make her less self-critical, more accepting of who she is.

[b-rad]

I wouldn’t see it as worth it. You’ve learnt over your life what adjustments to make. The reading you’ve done has helped you to understand better, but other than ‘knowing’ rather than ‘expecting’ to be on the spectrum, there really isn’t much to gain.

For children, it’s a different matter. They don’t have the life experience to fully comprehend their feelings and struggles, so getting a diagnosis can really help parents and teachers to approach things in a more helpful way. It’s a shame it wasn’t better understood many years ago - and many people have just had to deal with it and learn themselves.

[Kingstepper]

^^^ My thoughts exactly, seems rather pointless.

We are how we are.

[Mj2k]

I think your metaphor is a bit off the mark, because ADHD affects a lot more aspects of everyday life than cleaning, gardening and other housework. What it could change, possibly, is her peace of mind. Just having a plausible explanation for "that's why I don't fit in", "that's why I don't cope well in this or that situation". Potentially it could make her less self-critical, more accepting of who she is.

This 100%, and it is so good to read that some of the more senior member of this forum actually understand mental health, and the wider aspects of how it can affect so many things in day to day life.

OP, I would say go for it. If you can afford it, you get to understand why you are how you are. The online tests and self assessment is good to a degree, but it is just a starting point until you have a proper discussion with a professional.

Many of us can achieve a score on section A greater than 4 easily if we were properly self aware or critical. It is the process of assessment after that that matters & needs the focus.

With mental health issues used on here by some as a club to beat others with, as they have triumphantly never suffered, will never suffer, are too strong etc, and you can never recover from things like depression, given their limited understanding & knowledge. I’d say this was not the best forum on the internet to post such a question.


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[southerner101]

Never to old for self improvement! Get help, do all you can to live as close to a happy life as possible. GL

[RobDad]

My youngest son has Down’s Syndrome and we noticed some odd behaviour when he was about 2 years old. At a regular appointment I asked his child psychologist if we could have an autism assessment and was informed it would take years. I replied that I’ve got years so let’s start the process! When he was 9 - and having managed his often odd behaviour we had the assessment and were told within an hour that ‘your son’s primary disability is his autism not Downs’ handed a pamphlet about ADD,ADHD, you name it. It seemed very random and blunt and as we left my wife burst into tears. I remember saying that the diagnosis seemed very unscientific, we already knew our son exhibited odd behaviour. A piece of paper with a word written on it meant absolutely nothing compared to the shock we felt when he was diagnosed with Downs at 3 months! - he’s now nearly 22 and the diagnosis hasn’t really helped at all, it seems to be such a broad spectrum I’m almost certain everyone fits onto it somewhere. Our son has very poor speech and impulsive behaviour and the cognitive age of a 5 year old. Bluntly, If you have been able to lead a normal life I don’t see the point in a diagnosis tbh, you’re so low on the spectrum what’s the point??


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[Mj2k]

My youngest son has Down’s Syndrome and we noticed some odd behaviour when he was about 2 years old. At a regular appointment I asked his child psychologist if we could have an autism assessment and was informed it would take years. I replied that I’ve got years so let’s start the process! When he was 9 - and having managed his often odd behaviour we had the assessment and were told within an hour that ‘your son’s primary disability is his autism not Downs’ handed a pamphlet about ADD,ADHD, you name it. It seemed very random and blunt and as we left my wife burst into tears. I remember saying that the diagnosis seemed very unscientific, we already knew our son exhibited odd behaviour. A piece of paper with a word written on it meant absolutely nothing compared to the shock we felt when he was diagnosed with Downs at 3 months! - he’s now nearly 22 and the diagnosis hasn’t really helped at all, it seems to be such a broad spectrum I’m almost certain everyone fits onto it somewhere. Our son has very poor speech and impulsive behaviour and the cognitive age of a 5 year old. Bluntly, If you have been able to lead a normal life I don’t see the point in a diagnosis tbh, you’re so low on the spectrum what’s the point??


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That is shocking with the bluntness with your son. I can only imagine how brutal that delivery must have been for the two of you.

I do differ in my belief that whilst only a piece of paper, it is positive affirmation of what you perhaps feel or think is true, and can then further help personal development or understanding, and thus can help the OP.

Whilst he has already adapted, it is like the leadership learning with the likes of insights colour profiling / myers briggs etc what it means, how to adapt in situations, or to flex. He may have learnt it all, but perhaps not. There may also be relief gained from knowing it has not just been him etc.


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[RobDad]

That is shocking with the bluntness with your son. I can only imagine how brutal that delivery must have been for the two of you.

I do differ in my belief that whilst only a piece of paper, it is positive affirmation of what you perhaps feel or think is true, and can then further help personal development or understanding, and thus can help the OP.

Whilst he has already adapted, it is like the leadership learning with the likes of insights colour profiling / myers briggs etc what it means, how to adapt in situations, or to flex. He may have learnt it all, but perhaps not. There may also be relief gained from knowing it has not just been him etc.


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It was blunt, but nothing compared to the Down’s diagnosis out of the blue at 3 months of age! - I really think it’s up to the individual whether or not they want to seek a diagnosis as an adult and I’m not really in disagreement with you, I guess it’s such a massive spectrum that it’s hard to offer a catch all solution. What I will add is a general feeling over the last 13 years since his diagnosis that there’s a weird almost pseudo-science behind a lot of it. I’ve met lots of people on the spectrum and lots of parents with a child diagnosed with one of the isms, or ADD ADHD etc and almost all feel it’s a bit vague and whilst it provides a label it doesn’t really provide any kind of solution. However if you are an adult in the case of the OP and want to better understand your thought processes I’m sure it might offer at least an understanding of your own behaviour which might well provide solace in a better understanding of your self


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[Halitosis]

Really interesting thread, and thanks to all for sharing their experiences. I have no doubt that our youngest son (now 18) is 'on the spectrum' though Mrs H obstinately refuses to consider seeking a diagnosis or talking to him about his difficulties with friendships and relationships.
To be honest, I'm likely to let sleeping dogs lie, but suspect I may be angry with myself if in year to come we find we might have helped him better - even if simply to understand himself. All our teenage years are angst-ridden at the best of times. Perhaps I'll do a little online research on the subject.
Cheers

[Onelasttime]

Can't believe some of the ignorance being spouted here.

If you have an official diagnosis then work places have to make allowances and reasonable adjustments, so actually, having a diagnosis means an awful lot for people who've struggled socially and in the workplace, but had no idea why.

It can also come as a huge relief to people who've felt they're 'different' or 'think differently'. It can help explain certain situations and experiences, or could help to ease guilt or paranoia about how some situations manifested.

We don't all fit in the same size box that society expects us to fit in. I also suspect that the way the world and society have evolved over the past few decades has contributed to many more people feeling adrift and outside the 'normal' circle. Combined with improved understanding and diagnoses, I think society will have to learn to adapt and accept far more people on the spectrum, rather than, as has always been the case, expecting them to just fit in or go elsewhere.

It's the same with so many other mental and physical disabilities. It's always a case of 'fit in or **** off'.

[TaketheCannoli]

My particular comment wasn’t from a place of ignorance John, more a genuine question based on experience. If the OP’s answer was “so that I get the support I need at work” then that’s his reason. I have someone working for me who is highly neurodivergent. She knows she is but has developed strategies over her lifetime. She’s incredibly self aware and has
made the decision that she doesn’t want or need an official diagnosis.

I give her the space she often needs and treat her as the person she is, not as a diagnosis. I know she’s very lucky to have me as are all my team. They know that too and tell me all the time 

Can't believe some of the ignorance being spouted here.

If you have an official diagnosis then work places have to make allowances and reasonable adjustments, so actually, having a diagnosis means an awful lot for people who've struggled socially and in the workplace, but had no idea why.

It can also come as a huge relief to people who've felt they're 'different' or 'think differently'. It can help explain certain situations and experiences, or could help to ease guilt or paranoia about how some situations manifested.

We don't all fit in the same size box that society expects us to fit in. I also suspect that the way the world and society have evolved over the past few decades has contributed to many more people feeling adrift and outside the 'normal' circle. Combined with improved understanding and diagnoses, I think society will have to learn to adapt and accept far more people on the spectrum, rather than, as has always been the case, expecting them to just fit in or go elsewhere.

It's the same with so many other mental and physical disabilities. It's always a case of 'fit in or **** off'.

[Mj2k]

It was blunt, but nothing compared to the Down’s diagnosis out of the blue at 3 months of age! - I really think it’s up to the individual whether or not they want to seek a diagnosis as an adult and I’m not really in disagreement with you, I guess it’s such a massive spectrum that it’s hard to offer a catch all solution. What I will add is a general feeling over the last 13 years since his diagnosis that there’s a weird almost pseudo-science behind a lot of it. I’ve met lots of people on the spectrum and lots of parents with a child diagnosed with one of the isms, or ADD ADHD etc and almost all feel it’s a bit vague and whilst it provides a label it doesn’t really provide any kind of solution. However if you are an adult in the case of the OP and want to better understand your thought processes I’m sure it might offer at least an understanding of your own behaviour which might well provide solace in a better understanding of your self

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I cannot begin to imagine how that must have been, as we do not have children; but if it were my niece at that age it would have floored me completely.

Am sure some of the regular lesser thinkers here will use this to pile in on me as I give them a second club to beat me with, but I’m considering going through an official assessment myself. I score 5 in section A, repeating it over a period of time and feelings. I have tried to exercise it away, but it doesn’t help lol!

Really interesting thread, and thanks to all for sharing their experiences. I have no doubt that our youngest son (now 18) is 'on the spectrum' though Mrs H obstinately refuses to consider seeking a diagnosis or talking to him about his difficulties with friendships and relationships.
To be honest, I'm likely to let sleeping dogs lie, but suspect I may be angry with myself if in year to come we find we might have helped him better - even if simply to understand himself. All our teenage years are angst-ridden at the best of times. Perhaps I'll do a little online research on the subject.
Cheers

Please do the research, it can do no harm, neither can the assessment. My humour that age always made connections none of my friends had, they didn’t get it, the a while later someone else made the same comment and was suddenly amusing. If he is very quick witted and nobody keeps up or gets it, worth a look.

I just ended up sitting on my comments, thinking of the next one and keeping quiet. If some of his mates are a bit dense it becomes even harder.

Best of luck with what you decide.

Can't believe some of the ignorance being spouted here.

If you have an official diagnosis then work places have to make allowances and reasonable adjustments, so actually, having a diagnosis means an awful lot for people who've struggled socially and in the workplace, but had no idea why.

It can also come as a huge relief to people who've felt they're 'different' or 'think differently'. It can help explain certain situations and experiences, or could help to ease guilt or paranoia about how some situations manifested.

We don't all fit in the same size box that society expects us to fit in. I also suspect that the way the world and society have evolved over the past few decades has contributed to many more people feeling adrift and outside the 'normal' circle. Combined with improved understanding and diagnoses, I think society will have to learn to adapt and accept far more people on the spectrum, rather than, as has always been the case, expecting them to just fit in or go elsewhere.

It's the same with so many other mental and physical disabilities. It's always a case of 'fit in or **** off'.

Ah shut up & run it off, John lol. Train harder than you did in your 20s, stop being a weakness.

The feeling of relief is monumental, have seen it with friends and other friends children.

Since lockdown & working from home most of the time, I cannot deal with noise, be it background or loud continuous. Was at Menu Gordon Jones sat night, known for being loud as it is small & he plays loud music, cracking playlist but loud and all hard surfaces.

Knew instantly it was going to be an issue, almost invisible plugs in & was comfortable again.


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[RobDad]

I’ve spent 22 years trying to understand my son and his behaviour, and day to day life can be very challenging.
However our son has an advantage in that you can see he has a disability by virtue of his Down’s syndrome. We’ve often been out and about and people make huge allowances for his behaviour, because they can see he has a learning disability. In fact my wife and I have been stopped in the street by strangers on many occasions and been told what wonderful parents we are which is nice if slightly ridiculous, we’re his mum and dad and he’s our son. It’s not hard to be a good Dad to Harry - I can’t put into words how much I love him.
On another note I have spoken to many parents whose child has the same struggles as our son but looks - and I have to use that horrible word - normal - and they get glances and staring alongside mutterings of terrible parents etc. for them the diagnosis has been a godsend and their kids get the education and help they need. There is still so much ignorance out there, and it’s good to see this kind of thing being discussed


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[A440]

But I think my question is, has anyone on here maybe already been for an assessment ? Was it worth it, did it change your life finding out you may be on the spectrum..............or was it one of those 'I think I always knew moments and now I have a certificate to prove it', but jeez I'm £2k lighter now as well !

I'd been seeing my private pdoc for years and I realised he'd never given me a formal diagnosis. I kinda assumed Bipolar Affective Disorder as that's what my NHS pdoc had said years before. Anyway he looks at me and says that I have 'mild' autism but not to make a big thing about it. Being in my mid 50's at the time I thought that the diagnosis was about as much use as a chocolate teapot to be honest. But as time went by it has actually been quite useful. I've adjusted my lifestyle to being a bit more 'autism friendly' and this has reduced the amount of stress in my life. So a good thing.

I don't make a big thing about it with other people in my life, but have mentioned it to some friends and family. If I had known about it when I was growing up I think my life could have been a lot easier. So I'd always encourage for kids to be tested if they suspect they're on the spectrum. I'd definitely go along with the not making a big thing about it though. Sure, make sensible adjustments to your lifestyle if it helps. But don't go about berating 'neuro-typicals'...unless they deserve it of course ;)

[ryanb741]

Thing about autism is that once you've met one person with ASD you've met one person with ASD.

The spectrum is very wide and ranges from high functioning ASD to people at the other end who are non verbal and need 24/7 care for basic needs.

So if it satisfies your curiosity go for it but it won't really tell much.

[Brighty]

I believe I could well sit somewhere on the spectrum, always considered myself shy, socially awkward, high iq, top 1% allegedly, but very under utilised, though I did go to uni and have held down ok jobs since. Having a boy, now 14, who was diagnosed with autism and global development delay/ general learning difficulties at a fairly early age, gained me knowledge in the 'traits' and recognised most in myself. Scored v high in all the online tests about 10 yes ago, but at 49 now, married with 2 kids, working, I've never seen the point in making it 'official', don't see what it would gain. My now 12 yr old daughter seems to be becoming very much a me, always quiet and shy, but since puberty, it's becoming more obvious, some episodes of breakdowns in busy places like restaurants or school canteen, where it all becomes too much for her, so we've kicked off getting her assessed, though school have been good and have put things in place.
Personally, don't see the point of a grown up getting diagnosed, but that's me, you're you, go for it if you think it will help or give you some closure

[pugster]

i was given a HFA diagnosis in my early 40's (after spending 20yrs in the mental health system with multiple diagnosis )

the timescales for diagnosis are long (average 2 yrs in my area) , i got round this by quoting the NICE guidance on autism assessment timescales to my local CCG comissioner - after which it was sped up considerably (im not sure if the pathway has changed since due to the back log of people waiting but it used to say that you should be seen within 3 months )

be aware that although a diagnosis opens up 'extra help' in certain areas that by disclosing you are also opening yourself up to more stigma that follows the condition (and yes its as prevalent as ever) , also that some places (this includes GP's ) will only accept an official NHS diagnosis.

a few thing became apparent when i went to my first local autism group

1/ the spectrum is massive - there are people that are basically non verbal and others like myself that are high functioning
2/ there is very little help for adults out there unless you have difficulty looking after yourself.
3/ there is a lightbulb moment when you meet someone else with autism at the same 'level' of functionality as yourself and you realise just how different you are from the majority of the population in your way of thinking.

any questions feel free to pm me.

[Bonny Marco]

..
be aware that although a diagnosis opens up 'extra help' in certain areas that by disclosing you are also opening yourself up to more stigma that follows the condition (and yes its as prevalent as ever) , also that some places (this includes GP's ) will only accept an official NHS diagnosis. ..

2/ there is very little help for adults out there unless you have difficulty looking after yourself.

Pugster makes some excellent points.

It's worth thinking about what your next steps if you do proceed with the assessment and it comes up positive. I'm going to suggest that you think about seeing a psychologist/counsellor with experience in the autism area. They might be able to give support and suggest copying strategies and could advise you on some of the job/employment issues as well.

The BACP has a directory of registered members and you can search for professionals with experience in autism.

https://www.counselling-directory.org.uk

Granted, this might have to be private but if you're considering spending £2,500 on a private assessment, is it worth thinking about whether some supportive therapies might help you more than the piece of paper with a diagnosis? So push the NHS route and investigate private therapy?


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[Kingstepper]

What does the assessment involve for their £2500?

[TaketheCannoli]

Time and expertise I’d imagine.

What does the assessment involve for their £2500?

[RobDad]

For my son, it involved observing him and how he interacted with toys in a ‘social play’ setting - someone was in the room with him and we were outside for some of it looking through a glass window with someone else in a white coat. We had the diagnosis in about half an hour. Given a pamphlet and that was it. Was an NHS appointment we waited about 5 years for so no cost. Granted, our son was already on the radar of various agencies and he already had the Downs diagnosis and a blanket behavioural issues but if that assessment had been £2500 I’d have asked for my money back! He’s definitely on the spectrum but if he’d been in a different mood on the day I think he’d potentially have a different diagnosis - his speech is still poor but back then it was worse so he couldn’t express his feelings verbally. I even said this to the doctor on the day and he agreed, stating that the divide between ADHD, ADD and Autism etc was broadly dependent on interpretation. Glad I didn’t pay for what amounted to a pamphlet and a vague conversation!


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[Kingstepper]

For my son, it involved observing him and how he interacted with toys in a ‘social play’ setting - someone was in the room with him and we were outside for some of it looking through a glass window with someone else in a white coat. We had the diagnosis in about half an hour. Given a pamphlet and that was it. Was an NHS appointment we waited about 5 years for so no cost. Granted, our son was already on the radar of various agencies and he already had the Downs diagnosis and a blanket behavioural issues but if that assessment had been £2500 I’d have asked for my money back! He’s definitely on the spectrum but if he’d been in a different mood on the day I think he’d potentially have a different diagnosis - his speech is still poor but back then it was worse so he couldn’t express his feelings verbally. I even said this to the doctor on the day and he agreed, stating that the divide between ADHD, ADD and Autism etc was broadly dependent on interpretation. Glad I didn’t pay for what amounted to a pamphlet and a vague conversation!


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Yes, observation is what I’d expect for a child but for an adult (or an older child) who realises they’re being assessed don’t imagine it will be so straightforward..

[RobDad]

I’d like to think so but when there’s a 5 year queue for assessments I wonder if they bother?


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[Kingstepper]

Online questionnaire maybe?

[pugster]

Yes, observation is what I’d expect for a child but for an adult (or an older child) who realises they’re being assessed don’t imagine it will be so straightforward..

most undiagnosed adults will usually have an extensive history (usually in the mental health system)

mine consisted of looking at my medical history , long interview with specialist and talking at length to a family member.

[dice]

My 2 cents as diagnosed ADHD at 33, and most likely autistic to boot. Apologies in advance, this means I may ramble.

The diagnosis can be very vindicating, and almost liberating - hopefully it provides some better understanding of yourself too. However - the healthcare training curriculum and healthcare's accomodations to neurodivergence has only relatively recently started to catch up, and is still behind IMO. You may absolutely be autistic, but if the GP who assesses you just isn't "there" yet and fails you it could be an exasperating follow up.

With all the testing you've done and the resounding mentions you've had over the years, my best suggestion would be to skip the £2k and take it as an informal diagnosis. I don't see what the GP's assessmnent would accomplish.

Check out the Dave's Garage Youtube channel. He's a retired Microsoft engineer who got diagnosed later in life, and has a couple great videos about his experience.

[thorpey69]

I hope this is OK to write here, but although it's probably 50 years too late, I've finally booked myself into my local GP for the assessment process to start.

The bad news, is that apparently NHS waiting lists may take years to get through, so I'm already planning I may have to start saving for a private assessment. It seems £2500+ is the norm for that and which is no small sum of money to me, so expect to see my various items heading towards the 'For Sale' forum in the coming weeks !

I've already done the various online tests etc and all are coming out in the 90% confirmatory categories, so it already looks like a done deal really. Sure, we all love a bit of self-diagnosis and mine seems to be heading towards the Asperger's end of things (a term which no longer exists apparently), but it would certainly explain the very poor social and life skills, numerous job losses and very limited friendships made over the years. I'm also now totally sure that 'autistic burnout' is a thing and not ever to be confused with depression.

But I think my question is, has anyone on here maybe already been for an assessment ? Was it worth it, did it change your life finding out you may be on the spectrum..............or was it one of those 'I think I always knew moments and now I have a certificate to prove it', but jeez I'm £2k lighter now as well !

At this early stage, it's been reams and reams and hours of hours of background reading and YouTube videos for me researching everything I can find (as you would expect !). But at 64 and essentially working on my own, I'm starting to wonder if an assessment is maybe nothing more than just for peace of mind (myself and family), as I definitely wouldn't want to clog up any of the valuable support pathways afterwards that could be used for the much younger folk coming through and who still have their lives in front of them. But do I regret the last 40-50 years not knowing, that feeling of not fitting in and the huge hit on happiness, you betcha !

I would be so grateful if anyone may have some feedback, it really would help.

Hi I was diagnosed officially around 2 years ago when I was 53, I won’t go into details here in the public domain of why it came about, but I’m happy to talk to you on the phone and give you some of my story which might give you an insight into how it has helped me, dm me if you’d like to chat at some stage.
As a quick response to those who say what’s the point it’s to late to make a difference, it can, and has made a difference to me, gaining an understanding of why you have trodden a particular path in life, made decisions that have mattered in the past and learning to take steps to relieve the enormous never ending anxieties of normal life is important, also to help make life easier moving forwards is hugely beneficial.

[watchcollector1]

Our eldest daughter was diagnosed with ADHD (top 1% for inattentiveness), initially privately and then through the NHS in order to ensure would be given the required adaptations at school (she now also has a EHCP which provides additional funding at school).

For Autism had to go down the private route for diagnosis but it's been beneficial to help get the full support she needs.

My wife has recently been diagnosed with ADHD through the NHS and is awaiting a medication assessment, and our youngest daughter is on the pathway / NHS waiting list for ADHD assessment. A private psychiatrist as good as diagnosed her but to get an official diagnosis would now cost an extra £1.5k and we feel she is too young for medication now anyway so have decided to wait for the NHS diagnosis which she will need anyway for school adaptations.

There is also ADHD (and possibly Autism) on my side of the family, I have some traits but I believe not enough to get a diagnosis.

Regarding getting a diagnosis of Autism at a later age, I would ask yourself what you hope to get out of it. There is no medication for Autism but if you are looking for additional support maybe it is worth it. If not then maybe it's not worth the cost just to get confirmation. There's a lot of information out there so self research may be enough to get more understanding. I wish you the best of luck in either instance.

Do you have any traits of ADHD?