How do you know if you're autistic?

[ivegotamillionkids]

Posting for traffic and don't know how to vote as I'm on the app but...

How do you know?

I'm approaching 50 and not been formally diagnosed, but I have felt different my whole life.

Did you just go to your GP and say you've always felt different? How does this work? So fed up right now.

I have never felt 'normal' my entire life, and Christmas brings this home Every. Single. Year.

I just want it to all go away. And never see a person again. I would love to just live in my own little bubble of loneliness on a desert island. And then it would probably still be weird!

Anyone want to join me?

I am not pursuing a diagnosis. Logically, it will not make a difference as there is no treatment and I wouldn’t want to be any other way. When I am elderly I don’t want to have ASC on my medical notes in case that means HCPs make assumptions about my capacity and capability.

If you haven’t already watched it I’d recommend watching the Paddy McGuiness documentary that was on BBC recently. It was predominantly focussed on his 3 children who are all diagnosed but his wife also ended up talking to an expert who said it was highly likely that she was also autistic.

I’ve long suspected that I have autistic traits - I’m very routine focussed, get very thrown when my routine changes, very awkward in social situations, etc. I’ve also done several online tests and they have all shown me scoring highly for autistic traits.

I’ve debated whether I should look into a diagnosis but the key question for me is “would it change anything?”. The answer is probably no, I don’t need medication and have lived my life pretty well to this point (good job that I love, married, children, in good physical health) so would it add anything to my life? I might consider it in the future but for me it’s more important to understand my own behaviours and help me cope with situations I find difficult and I can do that myself without a formal diagnosis.

I have no problem saying my ds has Aspergers (just like I have no problem with saying BMW or with people owning them despite the company being 'linked inseparably to the crimes of the nazis'). I understand why others might not like it but to me it's just a name, and at the time there was some thought that Asperger might have helped people with autism who would otherwise have been killed (although I think it's believed now that this definitely wasn't the case). To me people with autism have much bigger problems than whether some bad dead guys name should be used as a diagnosis - which it isn't any more anyway. That much is pretty clear from the DNR people with ASD or DS thread. To me we need to worry far more about the bad things happening to people right now.

I do think differentiation is important depending on severity, I think it's important particularly for being able to access the right support and resources. It's bizarre to me that others feel differently as there are different 'levels' in almost all other diagnoses that then require different levels of intervention. For me it really doesn't help lumping everyone in together under ASD as it's a huge spectrum with hugely varying needs.

For my son the biggest hurdle in life I see for him are job interviews, it never seems to be raised as a thing but this is going to be his barrier to a normal life. He will do well at uni I'm sure, he will be able to live alone with a few written reminders and being shown how to do some things, and having direct debits set up for him, he would be able to hold down a job - but getting through an interview and being picked when he won't look at the panel directly, constantly twitches due to anxiety, gives the shortest answers possible to get it over with or great monologues on his interests is going to his downfall IMO. There are so many ways that interviews need to be changed to make them accessible for people with ASD IMO.

I went for ASD diagnosis OP with the NHS, my understanding is it varies hugely but I was seen fairly quickly. I stopped though when the assessor said he didn't know what to make of me and wanted me to see someone else. I would read up on it and write a list of your issues in relation to that and then see your GP.

@Bwix

I am not pursuing a diagnosis. Logically, it will not make a difference as there is no treatment and I wouldn’t want to be any other way. When I am elderly I don’t want to have ASC on my medical notes in case that means HCPs make assumptions about my capacity and capability.

This is what I thought/think. My adaptive and coping mechanisms are finely honed in most situations. But I have just listened to the Sarah Hendrickx talk I posted about earlier. She says that as we get older our ability to maintain our coping mechanisms degrades (I am paraphrasing). Then the autism roars into action.

I am noticing this in dealing with a highly stressful medical situation recently and I am wondering if it would be helpful to have the diagnosis as it would give whoever has to make decisions/help me something to work with. In reality I think it is too late for a diagnosis but I am going to give some thought to discussing it with family members.

Costs between about £1300 and £1700 for a private appointment around here (Midlands) - I'm waiting for an appointment myself next month. I tried approaching the GP who laughed and said there was a really bad waiting list so no chance, then I went via the university I'm at's Autism team who did initial screeners and put me on the waiting list for their psych - but I'm almost out of time on that one so I'm paying myself. At the moment uni are happy to support me as if the diagnosis is confirmed - but I do feel uneasy claiming the diagnosis in that kind of way without being officially given "permission" if that makes sense?

I'm going after diagnosis basically because the pandemic and lockdown has blown all my well-practiced masking and just shoving sensory overload to the back of my mind and hiding in the loos techniques out of the water. Result was that I went out on a placement for my course and got bloody hammered in the report for my own bloody social skills and it was all things that fitted with my ASD suspicions - so I'm going after the diagnosis to have the protection under legislation from being marked down again for being socially anxious at times (after a year of fucking home working and lockdowns) and being overloaded! (Yes I'm still incredibly pissed off about this now)

DD2 is Autistic - it manifests itself in quite the "female" presentation in that socially she can mask and is desperate to fit in - but underneath it all she's incredibly anxious and reliant upon routines to manage it all and generally can get quite a bit of a sobbing ball of anxious snot at times at home as a result of it all (she does give GREAT cuddles though!) It's not me being a precious mum, but she is an incredibly astute creature, although doesn't achieve well at school because there's also looking like there's ADHD there which we're on the waiting list for, but nothing goes past her attention - it all gets filed away and dragged out whenever it might be useful for her! That's just her though and the way her brain is wired up to do things.

For my son the biggest hurdle in life I see for him are job interviews,

Society labels people as worth less according to whether they are able to work. I do think this needs to change. A lot of autistic people are not good at predicting outcomes, so they choose a job wholly unsuitable for them which damages their mental health. This happened to my dad.

@CaveMum

If you haven’t already watched it I’d recommend watching the Paddy McGuiness documentary that was on BBC recently. It was predominantly focussed on his 3 children who are all diagnosed but his wife also ended up talking to an expert who said it was highly likely that she was also autistic.

I’ve long suspected that I have autistic traits - I’m very routine focussed, get very thrown when my routine changes, very awkward in social situations, etc. I’ve also done several online tests and they have all shown me scoring highly for autistic traits.

I’ve debated whether I should look into a diagnosis but the key question for me is “would it change anything?”. The answer is probably no, I don’t need medication and have lived my life pretty well to this point (good job that I love, married, children, in good physical health) so would it add anything to my life? I might consider it in the future but for me it’s more important to understand my own behaviours and help me cope with situations I find difficult and I can do that myself without a formal diagnosis.

I watched this the other day! It was really interesting.

In the subject of cost - £1200.

connecttoautism.org/diagnostic-assessment/

It's paid in 2 stages though so if after the initial questionnaire and phone appointment you are unlikely to be diagnosed you won't be put forward for the full assessment. So £400 is all you would pay if it was likely to be a no.

Based in Glasgow, but since covid it's online so location is no longer relevant.

For my son the biggest hurdle in life I see for him are job interviews

Years ago, I asked DD's SLT about employment opportunities and she said catering and garden centres were the usual routes for the less academically able neurodiverse students.

Nowadays many supermarkets actively recruit disabled employees.

Some companies actively recruit autistic people, stereotypically a lot are in the tech industry. Traditionally academia has also been home to 'quirky' employees.

There are agencies nowadays who help neurodiverse people into employment, do thoroughly google to find what's available.
here's just one
www.vercida.com/uk/articles/jobs-and-careers-for-autistic-people

Tal45 it's possible that assessor wasn't familiar with ASD presentation in girls and women. We are once again lumbered with a diagnostic system that's evolved only around males and their presentation, they generally have much easier to spot social difficulties whereas from a very young age many autistic women successfully mask because they want to fit in and be part of their peer group. Some assessors conclude that those women have no social communication difficulties, therefore are not autistic.

My biggest issue isn't that I am less able to do the job, I just don't interview well.

who struggle to accept that their child may have a disability and they feel the need to mention their high IQ or 'giftedness' because they think that means that they will be 'like NT' people and will not be someone who has a disability

It feels very bald and confronting to read of this as a disability
I’ve actually never thought of it that way
And again I’m not being ableist ! My dad was disabled , had the blue sticker and I saw his challenges day in and day out

And yet , I’ve just had a major build completed and somewhere at the back of my mind - I’m thinking my son may not be getting his gcse and a level in any hurry
And I’m thinking of making this a home for life if he needs it

Please do bear with me , we only had assessment last summer and as he denies it , his dad totally denies it (an ex ) and his sibling too it’s really bloody hard to own it

Can I ask about masking ? I’m
Convinced my son masked for a while and then at about 9 the wheels started to come off

And I’m Confused why he coped at primary (less to the end ) and literally can’t do secondary

This is a really useful thread
I’m learning shed loads
Thanks 🙏

For me (recently diagnosed on the NHS age 37, the wait was 9m) it became very apparent when my daughter was diagnosed aged 3 two years ago and I stated to go on courses to learn about autism so that I could help her.

She is 'high functioning' (not a used term anymore but seems to best explain her). She's highly intelligent, advanced even academically. She was a very late speaker but once it came it came in paragraphs. Most people don't realise she's autistic because even at age 5 (nearly 6) she masks so well but she has full time 1-1 support in the form of her own TA at school under an EHCP because she just cannot cope at school without it.

Seeing her and the things she struggles with ticked a lot of boxes for me reminding me of how I was as a child. She is basically like me, except in the 90s when I was at primary school I was just thought of as naughty, over opinionated, awkward and weird.

Then when I stated to do the courses and I learned more about autism generally - and about the stereotypes and how women and girls often don't fit them it was like 'ping! That's me!' Every five minutes.

So I'm now diagnosed, and am also on the pathway for an ADHD assessment too which I am convinced I also have/am.

For me a diagnosis has been a revelation. It's allowed me to say no to things, make changes, start - for the first time in my life - to stop suppressing my needs (not quirks, not wants, not preferences, needs) to keep other people happy. It's given DH a level of understanding as to why I find some things really really difficult that other people don't even think about. With that understanding he's able to be more accommodating- instead of thinking I'm awkward.

Awkward has been the overriding description of my for 37 years. No more.

I am a mum of two, carer to one, a wife. I had a successful career pre children, we own our home, we're financially stable and happy. I've got friends - not many, Ive always kept a small group though. I've managed all that being an undiagnosed autistic person wibbling my way through. I feel like with my new knowledge and understanding I can be better, happier, more settled.

A long post for Thisisworsethananticpated has gone into the ether.

Of course autism is a disability. read the bit about limit and impair everyday functioning, that's a definition of disability.
"“persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. "
Read more www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences
Think I've posted that twice already on this thread for other people.

You asked about masking
Primary school, one teacher for a whole year, one main classroom, lots of kids struggle to conform to the daily routine, you don't stand out much.
Playtimes and lunch have supervisors and not much choice of activity.

Masking is easy in early primary, you just pretend to be the same as everyone else and try to fit in, everyone's a bit awkward so you don't stand out.
Later primary, masking's harder as emotionally you are about two thirds of your chronological age so you like more little kids' toys and interests while the cool kids are doing more grown up stuff and you stand out a lot more as different.

Secondary school, one teacher for every subject, find the right classroom, have the right books for the right lesson, loads of people milling around en route, stress about being in the right place at the right time with the right kit. Repeat for every lesson. Other kids noticing you are different and not being nice about it. Yelled at by the teacher for not having the right kit or being late. No supervision at breaks and lunch, no structure. the mask slips because it's too much hard work to keep it in place.

I'd suggest you read a lot about autism and how it presents in different people, no matter if the family are not supportive, as of now, YOU are your son's advocate and YOU need to be clued up enough to navigate all of the help systems you can find to have put into place for him.
Are you on the EHCP pathway, if not, post in SNChat or SNChildren for help and advice.

Meant to attach this for disability.

It feels very bald and confronting to read of this as a disability
I’ve actually never thought of it that way
And again I’m not being ableist ! My dad was disabled , had the blue sticker and I saw his challenges day in and day out

Tbh, the main reason it's disabling is because the world is designed for NT people and that world is stressful for autists.

There are some good things about being autistic. I have many problems but seem to have learned to use my strengths instead.

santaclothes My biggest issue isn't that I am less able to do the job, I just don't interview well

There are lots of online tips for this, always easier said than done, but do persevere.

Video yourself, get friends and family to play the interviewer. watch the playback critically, can you see where you could improve?
e.g do you sit still and project confidence or are you hunched up and focused on picking your fingers? Do you mumble answers without looking at the interviewers, do you look like a deer frozen in a car's headlights when you don't immediately know an answer?

Treat it like a stage performance, study how confident people look and act and copy them.

sparklemagicsnow
Fantastic post, it's a joy to read how you've been helped by being diagnosed to feel comfortable being yourself. that's a massive improvement for you.

BlankTimes
Thanks so so much for taking the time to write that
I truly appreciate it 🙏
I’m a bit teary actually as you are totally spot on

And yes , I do need to educate myself
Since his diagnosis I’ve been having a build done (which will longer term benefit us all ) so it did put his post assessment autism research back a bit

Thanks again

Blank times
Sorry I have one more question if I may
What you said is my sons experience , spot on.
Fortunately I’ve been keeping a diary on that little fellow for a while as I was worried and didn’t know what to do .

Could I ask if you are autistic , or this was your child or students experience ?

Thanks @BlankTimes. I will keep this all in mind when preparing for interviews in the future. Also, I just wanted to thank you for your input - I have seen you on several threads about autism and your posts are always sensible and well written.

Can I just recommend Charlotte Moore's book 'George & Sam' about her two autistic sons who are very different from each other. It's a really well written book and is also funny.

@BlankTimes

Spectrum explanations

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

Anyone can have traits, but to be given a diagnosis, someone must meet the criteria.
"The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. "

It's the limit and impair everyday functioning bit that counts.

I was just coming on to post this. To get an autism diagnosis your traits have to impair your life to the point that it can be classed as a disability.

It's very difficult to get a diagnosis as an adult, especially an adult woman, as most women are so adept at masking. Often the wheels come off in the form of depression, anxiety, an ED or other mental health struggles. Often diagnoses such as BPD or similar get made - not that they are wrong, but the underlying diagnosis of autism isn't made.

My SIL has been in and out of mental health units and been sectioned many times throughout her life. It was only when we went through the diagnostic process for our daughter, we realised that it's highly likely that both my OH and his sister are autistic. Because they are both articulate individuals, the links were never made as children. My OH managed life quite well until he was physically ill and then the struggles in our family (autistic daughter, son with ADHD) have brought his autistic traits to the fore and he has struggled so much with his mental health since.

For those women who are considering whether or not they are autistic, there was a really interesting book on being diagnosed in mid age called Odd Girl Out by Laura James. Really worth reading.

I had a breakdown in my mid 20s and spent some time in a psychiatric hospital. They were some dark years of my life. Like a lot of autistic women, I was wrongly diagnosed with both bipolar disorder and then BPD, neither of which fitted in my case. Some people do have both but a lot don't.

For those women who are considering whether or not they are autistic, there was a really interesting book on being diagnosed in mid age called Odd Girl Out by Laura James. Really worth reading.

I didn't know about this book. Thanks for recommending.