Getting diagnosis (adult) - yes or no

I was diagnosed last year aged 37.  I had struggled a lot with my mental health since adolescence and had basically got to the stage where I felt utterly useless and dysfunctional, particularly because of my failure to build a career, or even to manage to work full-time or hold down a job for more than a couple of years.  My diagnosis changed that quite significantly.  I now can accept myself much better as an autistic person struggling to find a place in a world built for neurotypicals rather than seeing myself as a neurotypical who fails at things for no obvious reason.  I would definitely recommend pursuing a diagnosis if you think it will accept yourself more.

Agree with this, that's ultimately what diagnosis is for.

The GP is "right" in the sense that everyone is in some capacity mentally and physically unwell. I highly doubt there's a person alive that is 100% healthy in every possible way. Diagnosis is all about quality of life. Someone could have very mild autistic-like traits, but be completely unhindered and happy with their life. Maybe even have a higher quality of life than the average, in ways that an autistic person may never, without help.

That's the real, most meaningful difference. Being diagnosed can help to improve quality of live for those who need it, by letting those around them know what their specific needs and limitations are. I think NAS77223 would benefit from a diagnosis considering their mental health, and considering the fact that their son has autism, since autism does have a genetic component to it.

Speak to another GP, or if you can afford to, get yourself assessed privately. That's awfully bad practice of the GP you had the misfortune of seeing. Autism has a genetic component, so since your child has it, it wouldn't be at all surprising that you also do indeed have it. If you feel like a diagnosis would help you and your son navigate being autistic better, then you should definitely seek out consultation with a specialist. It's your right to do so. You deserve to understand yourself and your needs better.

The "everyone is a little bit autistic" thing has me fuming, actually. That could be said about any condition, in a sense. Someone goes to see a GP with some physical condition, and then they write them off by saying "everyone is a little bit unwell." While true, because health is not a matter of being on or off - health isn't a binary of well v unwell - and the same can be said for any physical or mental health condition, a diagnosis is all about understanding why we experience the things we do. I might not go see a doctor for a very mild and/or temporary pain, but I would go and see a doctor for a worse and/or longer lasting pain because maybe a doctor would be able to help somehow. Maybe they could at least put a name to it, and let me know if it's serious or not.

I understand doctors are overworked, especially currently, but there is no excuse for these kinds of lackadaisical attitudes towards patients. Getting sick and tired of hearing about these kinds of stories. It's mistreatment, pure and simple.

Hi there, 

I was diagnosed last year at 46 :) My son was diagnosed at 4 years old (16 years ago) but I never really saw it in myself until about 3 years ago. Like you I had anxiety but put a lot of my autistic traits down to other things.

For me, the diagnosis has been really positive mostly. It has allowed me to have more compassion for myself and most of all, understand myself better. I am still getting to know the real me after years of masking, and accepting this new me without judgement or self criticism.

Good luck on your journey of self discovery x

I do still wonder whether to seek a diagnosis and settle the question once and for all, but wouldn't know who to turn to in the country I live in now and frankly would still worry that any positive diagnosis could be used against me in some way. However there were some big placards around showing a woman with the slogan 'the person next to you on public transport could have autism' so there may be hope yet. 

I was, sent to a child psychiatrist at 7 or eight, a school psychologist at 11 because of difficulties at home or school but it was seem as some form of craziness then. I saw my medical notes by accident once and the word 'prepsychotic' came up. At 18 months I stopped speaking according to mother, when I had been speaking in grammatically accurate sentences before.

It might be useful to know in other ways. 

Yes I totally understand what you are saying. It sounds good that some of these issues are beginning to be addressed and good on you for playing your part. Haha I don't think there's any denying that party

By the way, its against the law to comment on Boris's garden party until Sue Gray has reported(!)  

I don't believe in doctor bashing either but there are fundamental flaws in the socialisation element of the training which (to be fair) are being addressed by most of the 37 or so medical schools.  The notion that "doctor knows best" led to some horrendous outcomes and case histories and stemmed from a culture in which doctors were encouraged to carry themselves in a way which is no longer appropriate.  Even Harold Shipman had an impact on that.

Previous generations of doctors were encouraged to view only clinical issues and not to "listen" to the patient.  That is changing.  Airlines had to undergo a similar process when air accident investigators showed conclusively that a number of air crashes had occured because First Officers had been afraid to challenge a patrician, overbearing Captain.   I even had a minor role to play in some of the work which corrected that, though it went on for years and my involvement was fleeting.

There are ASD traits, and there is trying to navigate life with those traits. The GP isn’t even bothering to acknowledge your ideas.
if it doesn’t bother you within your daily life and functioning, then no, a diagnosis would be pointless.

If you know somethings up and can identify these traits in yourself, are hindered in life, are not living a fully rounded existence, coupled with mental health issues, I think an assessment would be worthwhile. There will be much to learn about yourself, and I think you might only actually accept it, if you hear it from a professional. There’s a lot to be said for ‘labels’. Some people fare much better once they get one.

Very good point, I think the support post diagnosis has come a very long way and Ive discovered some great resources and local groups for my son. The problem I feel is with getting the diagnosis which I've found to be of great concern to many after seeing several TV and articles highlight the issue, my own experience and speaking with others. I worry many won't get the support they need as many dont get diagnosed when it would benefit them as they may get fobbed off.  I'm lucky that my work provide private medical so I can get my diagnosis unfortunately they couldn't cover my son so it took almost 3 years, however the school can now get more provisions and support in place to help my son

Exactly.

Yes ... you just need to be very careful who you choose.  I did mine privately, but the guy who did was also a senior Consultant Psychiatrist in the NHS. But some people offering this service aren't very credible.

What you say is true, although I'm thankful that I was not diagnosed as a child or teenager - 'treatments' for people with autism in those days were not always very nice, and I don't believe I would have had the education, the career, or the lifestyle that I've been able to enjoy if I'd carried that label since the 70s.   Very different, now.  Glad you 'got away' from the psychiatrist.  

Gosh, I'm sorry to hear this, what an horrendous experience thankfully you have a supportive family. Yes I even said to them I'm happy to go private as I don't want to take the time up of an already overstretched NHS or that I was happy to wait until this 'calmed down'. Luckily my work provide private medical benefit so I've just been on the phone to Bupa who have forwarded my the details to get the ball rolling. I feel very fortunate to have this and feel for those who don't have this option in place. I'm certainly not here to bash the doctors I think the vast majority do an amazing job in a Very under resourced and challenging time and I'm very grateful to them and support our NHS. However more needs to be done for the Autistic community regarding diagnosis without a shadow of doubt. I'm a big believer in helping yourself and doing what you can for your own situation but sometimes intervention and support is needed and in this example I can't diagnose myself! Hopefully the government will give this problem more attention, maybe Boris can discuss this at his next garden party

Thanks for your honest experience and sharing it with us on the group. I really hope you and your daughter get the support you need and deserve. It's great we have this platform to support each other and find understanding. Yes many many don't get it but bit by bit hopefully we can start to knock down those barriers. I certainly have started to challenge/educate in a diplomatic manner people's pre judgements. 

GPs are very fond of high-handed dismissal of patient concerns and can be extremely arrogant. I've had my life saved three times by (in order) my mother and my wife, because they ignored two GPs, and then a doctor in A&E.

So our family's direct, personal experience is that parts of the NHS are very good, but if you have a real problem, you're on your own.

If you can't fight for yourself (which the most vulnerable people can't) may your God help you.  Here's what happened, briefly:

1.  In the 1970s, my mother ignored a GP, who was also a family friend, when I developed a lump on my neck and he dismissed it.  He said it was 'strain due to revising for my A Levels and leaning on a hand'; he said that for weeks, and became cross, frustrated, and in the end, patronising, with my mother, who thought it was more serious. She got equally strident back (she's not to be trifled with) and in the end, to shut her up, I was admitted to hospital for tests.

It turned out to be cancer, requiring urgent treatment, and although I'd only gone for a few hours of tests, I was admitted straight away and didn't go home for months; but that treatment was delayed by weeks because of the arrogant intransigence of our 'family friend' GP.  .   

2.  Some years later, in the mid 1980s, a GP in a different region of the UK, who (again) I knew socially through his daughter, told me to go home and rest because "you just have chicken pox" ... but if you've had your spleen removed and have a damaged immune system due to cancer treatment, chicken pox can kill you.  I was 999-d into ITU because my mother, 150 miles away, could tell over the phone that this was more serious than just 'chicken pox'. She drove up through the night and an ambulance was at the door within 30 minutes, the crew wearing hazmat suits because of my physical appearance.  I was in ITU for 10 days with severe Sepsis as a secondary infection and for the second time, my family was advised to prepare for the worst. 

(Both GPs at least had the common decency to offer extensive and humble apologies, though in the second case, it was fairly transparent that he was mainly trying to stop me pursuing it on a formal basis.  My parents' friendship with the first one never recovered; my mother said she could forgive his misdiagnosis, but not his offensive, patronising attitude and show of petulance and annoyance at the alleged waste of his precious time when she insisted something more serious was wrong.  I have to say his apologies were fullsome, and actually a bit teary, and he did a lot to try to make amends; my mother always said afterwards that she was on speaking terms with him, but that didn't mean she wanted him to come for dinner again).   

3.  A decade ago I was admitted as an emergency to hospital and after a few hours the A&E doctor told my wife to take me home, there was nothing wrong with me. My wife, and (fortunately) a senior nurse, disagreed; the nurse quietly moved me to a more discrete area, did a load of tests, and by some means had me admitted to a ward, behind the doctor's back.  The following morning I experienced sudden and dramatic blood loss in the ward (haemoglobin fell from normal to about 5.5 in minutes, which means your veins are collapsing and a heart attack is imminent, blood all over the floor, crash cart, emergency transfusions etc).  If this had not actually happened in a hospital, it would not have been survivable; no ambulance could have got there in time.  That particular doctor presumably never knew that his daft, patronising comments to my wife had been ignored and that I was admitted without his knowledge, so he'll have learned nothing from his mistake.  

Some of them think they are the only people who are busy, that they are more important than the rest of the population, and that no one else has the academic rigour required to read and comprehend peer-refereed scentiific papers. 

NAS77223 said:

I feel getting a diagnosis will help me understand myself and accept myself more.

Indeed it will.  I had a diagnosis at 64 and it has fundamentally improved my life, because I've been able to study autism, approach it from an informed base, and re-engineer aspects of my interaction with other people.

NAS77223 said:

It may also help my son which is the most important thing to me.

Absolutely.  All self-knowledge contributes to your parenting skills, and since there is almost certainly a heavy inherited element in autism, it may help you to identify it in your offspring - and early diagnosis for them is important on multiple levels.

Your GP's comment was annoying and ill-informed.   There's no "cure" for autism (as pretty much everyone knows) but that's hardly a reason for not having a diagnosis.   

What they meant was "we're very busy dealing with priorities because of Covid - if you don't have a condition that will kill you, in the next few months, if untreated, we haven't time for it". 

But they should have the decency to say that (many people would understand, given current circumstances) and not fob you off with an immature, factually incorrect comment.   

Good luck with everything.  

Isn't it strange, how many of us are only diagnosed in our later years! I guess it was never picked up upon when I was a child. I was always "too sensitive, too naive" and "awkward child", a "delinquent" etc., etc. As it happens I was also very, very studious and if any of my teachers wanted to find me (because I missed lessons sometimes), my dad would "you'll probably find her in the library, she's always got her head buried in a book/books" and lo, there I was, in the school library literally surrounded by a wall (a 'fortress' of books) -- it's who I am!

My issue is that no-one seems to either really know what it is like to be on the Spectrum, unless you are on the Spectrum. When I was a child, like you, I had serious, serious issues with people, never with animals, books. I had acute and chronic episodes of mental illness. My mother was bi-polar, dad had severe PTSD because of the war (WW2), my brother became an alcoholic.

My mother died of multiple organ failure (alcohol). When I was very young she sent me to a psychiatrist who wanted to get me committed to a mental hospital. I fought that, and got away. But the legacy of all this, plus emotional and psychological abuse perpetrated by my mother did not at all help the situation.

As an adult, of course I still have issues, and have developed survival strategies but I'm constantly exhausted; extreme tiredness and the repercussions of any social events that I attend leave their mark. Sometimes rage and at the same time, suicidal tendencies really get me down and people get scared because I lose control.

Normally I go off and drive somewhere, where no-one can judge, or criticise me, and then I have freedom. Long walks in the country where there are no people whatsoever is my salve. I just wish I had some animals who go with me!

Animals for some reason gravitate to me. I love animals, really love animals. It scares me sometimes how if humans suffer I don't bat an eyelid, if an animal suffers, I'm a wreck.

In an another life I travelled on my own to Africa, both north and south where there is space. In the Sahara Desert or the Kalahari there is no-one - I like it this way, just me and the elements in a 4wd. I guess this is also who I am.

So I echo, and fully comprehend and understand your predicament. My own daughter as serious anxiety and depression problems, she'd often a wreck to0. She's got two boys of 10 and 8 and is a single mum, so yes, her life is not good either most of the time.

She like me descends to dark places so often and in her case she self-harms and takes certain substances. In my case I still have suicidal thoughts. It is so tempting, almost irresistible, to commit suicide; nobody even knows and I like it this way. I never speak of it, only to people who are in the 'know' like my daughter and my one best friend from school, whom I've know since I was 11!

But at the end of the day, I am a who I am. I am also a scientist and a writer, so it has taken me a long time to even begin thinking and acknowledging that I have been on the spectrum all along, for all of my life. Because I had all these stereotypes about Aspergers and Autism.

R

I wish I could help you more with regards to your son. It is so difficult, and it is so sad that many people just don't 'get' it, do they?

Good of you to respond so kindly. Private autism assessments do not need a GP referral, or any involvement, but they seem to be around £1,000 in price at present. They are also very significantly faster.

Thank you Martin and I am glad you got validation you needed. You make some excellent points here that I have taken on board. You have clearly been successful in understanding and managing your Autism, well done and cheers for the support x

I was selectively mute for 3 months when I started school, and nothing was done about it. Back in the 1960s even fairly obvious traits were not picked up on.