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AMA

I’m autistic AMA

146 replies

EbbyEbs · 16/09/2022 23:02

Diagnosed at 39. AMA

OP posts:
ClumpingBambooIsALie · 18/09/2022 02:44

DancesWithFelines · 18/09/2022 01:55

Hi and thank you for this thread. I have a DS age 15 who was diagnosed a year ago.

How do you experience loss/grief? We had to let one of our cats go today. DS loves the cats, cuddles and chats to them, cares for them etc but seemed nonplussed at saying goodbye to the cat today. Very much "all things must pass" and then retreated to his bedroom where he usually goes. Do you think he is ok or will it hit him later?

Are you a reluctant washer? If so, is that because of sensory reasons or just the energy involved in showering? DS is quite reluctant, one of his special interests is the 'curly girl' method for his long curly hair so at least it's getting a regular conditioning (if not a full wash).

Not OP, but I have an ASD diagnosis and I don't really experience the feeling of "missing" people (or pets) when they're not there, whether that's because we're separated for a while, one of us moved away, a change of school/workplace/whatever, or they died. (Admittedly the only people I've known well who have died were my grandparents — I don't know how I'd feel in other circumstances.) It doesn't mean I don't love them, care about them and enjoy spending time with them, or that I can't look forward to an upcoming meeting with them. I make an effort to keep in touch with some people via WhatsApp etc. because I get something out of interacting with them or because I know they could do with some support or because I care how their life is going. I've never experienced anything I could describe as feeling that I miss a person, or a pet, but that doesn't mean not loving or not caring.

And I HATE washing. Going from being dry to being wet… ugh. Then afterwards, feeling all wet when you want to be dry. And it's such a lot of effort for something that will only ultimately have to be done again in no time at all. And for what? Primarily, for a social norm requiring complete absence of human-generated odour at all times, and where addition of unpleasant synthetic odours is also expected. I mean, you have to wash a certain amount to avoid skin diseases and overpoweringly repulsive smells, but washing all over and applying various products to prevent odour production and putting on a full set of clean clothes every single day… it's a hassle.

(I do wash, though. I just don't like it.)

The above-mentioned feelings are things I do not, as a rule, tell other people about, BTW.

couchcritter · 18/09/2022 06:14

I miss people sharply at first, possibly way more than they miss me, but then often sort of forget about them (with the exception of DH who I miss terribly if he's away). When I see them again I am often overjoyed and remember how much I care for them and like their company.

I also sometimes think things are fine and stay calm, then get hit by grief or shock much later than everyone else, which often makes me an excellent person to have around in any kind of crisis, but means I'm out of sync with people around me who are already over it.

NDMum · 18/09/2022 06:55

@EbbyEbs it was likely the ADOS assessment you had?

EbbyEbs · 18/09/2022 08:18

Punxsutawney · 17/09/2022 11:34

Are you glad you got your diagnosis?

I was diagnosed two months ago, age 46. And since then life has somewhat fallen apart. Post diagnosis counselling has identify significant childhood trauma. And that alongside processing the diagnosis and supporting my autistic child has left me pretty broken. What I thought would be an explanation of my life seems to have turned everything upside down.

I’m sorry to hear that. I chose not to have any counselling as I’m quite happy to keep my demons in their box. I’ve seen what “therapy” can do to people.

I am glad I got my diagnosis as it answered so many questions I have always had such as “why doesn’t anyone like me”. “Why do I always say the wrong thing?” “Why do people think I’m weird?” Etc

OP posts:
EbbyEbs · 18/09/2022 08:20

lookthisway · 17/09/2022 11:40

I was once told by a counsellor that she thought most people have some autistic traits. Do you think that is true?

I think most people have personality traits that are similar to autistic traits but I really disagree with the notion that “everyone is a bit autistic”. It’s so insulting. It’s like saying “everyone has a bit of tourettes” or “everyone is a bit OCD”

OP posts:
EbbyEbs · 18/09/2022 08:25

MrsMarkRonson · 17/09/2022 11:45

Did you ever get told growing up you were 'too sensitive'? I suspect i am autistic (Have an autistic DS) but unfortunately went to a very narrow minded backwards school (was like the '50's even though it was the '80's) and that was what my teachers told my parents. Now my mum acknowledges it wasn't true but just curious if that is seen as an autistic trait.

Not really as I was never sensitive - I was the opposite. Heart of steel so to speak.

I also went to a backwards 80s school and the teachers were horrible. I was once told by a teacher that I was a horrible little thing. On another occasion I was made to stand and watch everyone else get their art work put up on the wall as mine was left on the floor (I’d made a comment that was factually true but supposedly inappropriate - I was 8 years old). I was always picked last for teams and the teachers would laugh at me stood there on my own and make comments such as “see what happens when you don’t make friends?”

bastards, the lot of em! Thankfully I’m extremely tough skinned.

OP posts:
tartancladpjs · 18/09/2022 08:42

I had the dog breed book! What breed did you choose after all the research?

EbbyEbs · 18/09/2022 09:52

tartancladpjs · 18/09/2022 08:42

I had the dog breed book! What breed did you choose after all the research?

I’ve been through so many 😂 as soon as I left home I adopted my all time favourite - a German shepherd boy from RSPCA. He had been severely abused and neglected, I loved him dearly and I never even needed a lead to walk him, he would never leave my side. Strangely one day he suddenly attacked me out of the blue, no warning, I wasn’t doing anything - he just went mad. I had to barricade myself in the living room and call for help. I was told to get him out to sleep but I just couldn’t do it so I rehomed him to a bloke who wanted a German shepherd for work purposes (he was in security and the dog would be going to work with him every night etc). In hindsight I should not have done that but I was young and didn’t know what the hell to do, I couldn’t have him put to sleep, I just couldn’t do it. After that I adopted a female German shepherd who had been used for breeding purposes. She died soon afterwards 😭 after that I stuck with Rottweiler rescues for a while and then eventually, I got my first puppy a few years ago. A Dobermann ☺️ I think I’m too old and soft for the working guarding breeds now though so my next one will likely be a golden retriever.

OP posts:
EbbyEbs · 18/09/2022 09:56

LadyGardenersQuestionTime · 17/09/2022 11:57

DS(32) has many autistic traits (esp sensory and social) but has chosen not to be assessed. He lives independently a long way away from me, works from home, shares a flat with an old friend but has no social life, IS very into playing online but no set games, only calls me if his sister nags him to and never calls anyone else.

How do I know he’s OK? How would I know if he’s miserable?

Unfortunately I don’t think you ever will know unless he chooses to tell you. My mum never knows if I’m ok or not as I have a great poker face and it’s rare that I open up about my feelings. Nothing anyone could do could ever change that about me. My son is the same, he would tell me he was absolutely fine and would be laughing and joking etc and then would drink himself into oblivion and end up in a secure facility for weeks. I’d never see it coming. His poker face is just like mine.

OP posts:
EbbyEbs · 18/09/2022 10:01

User12398712 · 17/09/2022 12:04

Somebody once described to me that being hearing impaired (acquired rather than being in the deaf community) is like trying to have a conversation at a really loud party. You only catch little parts of the conversation and everyone else seems to know what's going on and you nod and smile and end up exhausted. I wonder if socialising whilst autistic is something akin to this?

Yes I think it is. I don’t always interpret body language well so I need to really concentrate on working that out which means I often miss what is actually being said. An example of this was a few weeks ago I was chatting to a bloke, I was trying to read his body language and we were discussing dogs which is my comfortable subject. He then made a joke but I was concentrating so much on coming up with an appropriate response to the conversation that I missed the joke. It was something like “my dog loves chasing balls, so do I to be honest, I’m often seen running up and down the beach chasing balls that the wife throws for me” and I replied “oh really?” And he said “that was a joke … “ 😂😂

OP posts:
EbbyEbs · 18/09/2022 10:07

Bex268 · 17/09/2022 12:10

My little boy is autistic, 2.5, pre verbal and has limited play skills. I worry about him so much but it’s more how others will treat him, not him himself (if that makes sense). He’s a joy to be with, he’s funny, loves to be outside, affectionate and is a sensory seeker. My little boy is delayed in social skills and other areas. It is becoming increasingly more noticeable.

we pay private for OT and SaLT. Do you think in time he’ll develop more skills and the gap will close or that I need to do more?

with everyone it’s so different, autistic or not. I did a understanding autism course - it was full of negativity and what I read was not the little boy in front of me.

Sorry to hear you are feeling sad about this, bless him. I would imagine his speech will catch up and hopefully he will be fine in that respect. The social skills side might improve somewhat but he will probably always have difficulty in this respect.

If it makes you feel any better, my eldest son was the same as your son. He had delayed speech, terrible social skills, needed speech therapy etc … he thrived in university, got a good set of life long friends, a lovely girlfriend and now has a brilliant job that pays well that he really enjoys. He’s very popular - despite still being socially awkward!

OP posts:
tartancladpjs · 18/09/2022 11:11

Oh wow a real journey with breeds! Not to send you off track but if you live all of the above you'd love a Bernese mountain dog 🐶

JadedSoJaded · 18/09/2022 11:18

Very interesting thread. Thank you OP.
As an autistic person, can you identify other autistic people fairly quickly when interacting with them? Do you find there is a different presentation in adult men and women? I have worked with a few autistic male colleagues, in an industry (tech) in which many autistic people excel. Statistically I must know more than a few women too, but none have been open about it. Nor have traits seen typically in the men been obvious in any women. Or do women naturally learn to mask the condition due to social conditioning from a young age?

Sonicplatonic · 18/09/2022 12:16

Thank you OP for this AMA. It's actually made me cry. I'm mid forties now and struggled my whole damn life. I am not diagnosed with anything other than anxiety which I'm not even sure I have actually been diagnosed with officially.

My dad disappeared when I was 7, he couldn't cope with the demands of staying put and the monotony of family life I guess. I can only hate him for what he did to us but I also understand that if he is/was autistic (no contact), he has struggled with life. A bright, practical man but could never stick at a job, anything. I think I have inherited his traits.

What pp have said about trying to talk to people and finding it really hard to stay focused on the conversation, eye contact (argh!!), mimicking them etc. That's how I feel. You're all so right, the whole masking process is utterly exhausting.

Feeling different as a child is awful. Awful. My younger sibling was v social. I tried to be but just wanted to be alone and draw or with my dogs. Or drawing dogs! I hid from my vile stepfather from the age of 7 and just drew or walked my dogs.
Tried to fit in at school /college. Couldn't wait to leave. At college my lecturer told me my problem was that I was just too sensitive. That was the least of my problems!

Finally now in my forties I am at peace. I don't have to go out with friends. Its fine. I do still hide away now when guests come and are here too long. The conversation is torture after a while. Any friends that I have had to make an effort to keep up with have drifted away. Unless they make the effort!

My DH gets me to a point. Knows if it wasnt for my special interest (dog hobby), I'd be nothing and get depressed but he gets impatient with me, doesn't like that I can't keep eye contact with him. Can't do face to face talk. My hobby gives me all the social I need and like others, need a couple of days zero contact with outside world to recover!

I can't work. I tried and have the qualifications to be able to do so. I can't tolerate people for long or the demand of being somewhere for a certain length of time that someone else dictates. I am a SAHM which suits me fine. Volunteering is fine as it's my choice to be there and I can leave, no pressure to perform!

My question to those diagnosed is, has a diagnosis affected your driving at all? Ie insurance or licensing? I was referred but I turned down the appointment in the end as I don't really think now it's worth me seeking a diagnosis but for my DC who is lucky to be like me, I don't want a diagnosis to be a hindrance to driving? Thank you

Am8 · 18/09/2022 12:32

Great thread, thank you for answering questions. I am 45 and believe I am autistic and I am considering whether to look to get tested because my mental health has taken a battering the last few years, and I am struggling a great deal atm. I haven't had a chance to read the entire thread and need to go out for a few hours (not looking forward to that), anyway I was wondering if your disgnosis helped you? You were in a bad place and didn't receive counselling, so did the diagnosis and learning about what that meant make a massive difference to you?

If the question has already been asked I will read it later!! Thank you again.

ofwarren · 18/09/2022 13:07

Those of you who are questioning whether you are also autistic, there is a dedicated board on mumsnet under the special needs section called "neurodiverse mumsnetters".
You are welcome to nip over and have a browse and maybe join in the conversations on there. I think you will feel at home.

Punxsutawney · 18/09/2022 13:49

Sonic, I hate driving. I'm a very safe driver, but only drive out of absolute necessity. I also only drive locally and to places that I know I will be able to park easily.
Ds for example attends a specialist placement 20 miles away. I'm not sure I could do the drive there. Very grateful that the LA provide a taxi for him.
Have no idea about impact on insurance or driving license. Not something I've even thought about.

ClumpingBambooIsALie · 18/09/2022 13:51

@Sonicplatonic if you're autistic but it doesn't affect your driving, you don't have to notify DVLA of an autism diagnosis. About 3 years ago there was a bit of an outcry because the DVLA announced that they were putting it on the list of conditions that you must disclose to them no matter what, but then people pointed out that if you are autistic, you were autistic when you passed your test, too, so they backtracked.

Lilgamesh2 · 18/09/2022 15:14

What an interesting AMA, thank you OP (and other contributors) for being so open with your experiences.

What do you think causes autism in people, aside from genetics? Or is there no cause, like how there's no cause of being "normal"?

You mentioned that you didn't care when a boy broke his arm. This surprised me. Can you please explain a little more about how you experience empathy? Is it different to the neurotypical experience? Would you have cared if he'd sustained permanent damage? or if you'd liked the boy more?

ClumpingBambooIsALie · 18/09/2022 16:00

Don't mean to try to take over 🤣 but I can answer the empathy question on my own behalf. Yes, I believe I experience empathy in a slightly atypical way, but I don't think that it's necessarily intrinsically bad, or that it leads to me harming others any more than anyone else.

You mentioned the part where OP said "as a child I pretended to be upset about a boy breaking his arm because everyone else was" — I'm not convinced that, actually, most neurotypical children or adults would be actually upset about a child's broken arm, unless as you say they were very close to him or there was permanent damage, or if they were actually present at the moment of the injury.

I think, from what I have managed to work out from talking to people and reading, it's perhaps more that they take on and understand very easily the social expectation to react in particular ways, and more instinctively respond with sympathy and sad faces when someone walks in with a new cast, whereas for an autistic person it might have to be more explicitly learnt that you may be disapproved of if you don't do that.

One of my experiences of this was the first schoolday after the death of Princess Diana. I walked into the classroom for registration and everyone was acting weird. It emerged this was to do with Diana's death, and I asked something like, "But why are you upset? You didn't know her, and lots of other people died that day".

And now, in later years, many people discuss it like that, and make out that's how they reacted. But in the immediate aftermath, the general neurotypical reaction, especially somewhere conformist like a school classroom, was to behave like others and act out a feeling of, not surprise or shock, or recognition of a historical moment, but a low-key facsimile of personal bereavement. I probably had feelings not so dissimilar to many others', at least going by how many talk about it now, but hadn't understood the social expectation to act out personal sadness. (I'm sure some were genuinely personally saddened, especially if the death resonated with something in their own lives, but going by how people have talked about it in later years, most won't have been.)

Another area where I differ with mainstream empathetic functioning is that I cannot get any enjoyment out of watching public embarrassment or humiliation of other people, whether I like them or not. I know it's not every neurotypical person who enjoys this, but a significant proportion must enjoy watching things like talent shows where misguided people are encouraged to perform so people can laugh at how bad they are, or You've Been Framed style clip shows where the biggest laughs go to videos that are humiliating and even physically painful for the people in them.

I suppose my empathy is quite unsophisticated in this aspect, because I see a person in [emotional] pain or unknowingly exposing themselves to future [emotional] pain, and it hurts. The contextual and social cues — the type of television programme, any soundtrack, the host's tone of voice, the audience reaction — which presumably act to modify the neurotypical empathic response to one of laughter rather than upset, don't work very well on me.

ClumpingBambooIsALie · 18/09/2022 16:30

I guess what I'm saying is that, at least for me, it's not that autism significantly and directly has an impact on my affective empathy (i.e. what I emotionally feel about things happening for other people), when I know or can reasonably infer what's happening to a person, or how they may be feeling.

It's more that my reactions may appear different because of differences in ability to infer others' feelings (i.e. cognitive empathy), differences in whether other people's reactions and unspoken social expectations affect my emotional reactions, and differences in ability or inclination to carry out certain expected behaviours.

I don't think my feelings are wrong or my affective empathy is deficient, but I do my best as an adult to carry out socially expected behaviours, to avoid discomfort for others and social exclusion for me.

ofwarren · 18/09/2022 16:52

Do you have sensitivities regarding clothing?
The change in seasons is awful for me because I struggle with shoes and socks. I ended up in tears this afternoon.
It's been raining so I couldn't wear my usual walking sandals and had to put on socks and boots. My toes are literally throbbing with the sensation.

It all came to a head when I bought new leggings (the only trousers I wear) and the waist band felt scratchy and they feel really different to my old pairs. I tried them for an hour then put my old ones back on 😔

Having to think about coats now too. It's all so stressful and upsetting to me. Happens every year.

Lilgamesh2 · 19/09/2022 11:30

@ClumpingBambooIsALie thank you, this is so insightful.

BoardLikeAMirror · 19/09/2022 13:28

I have terrible trouble with shoes. Basically, by the time a pair is comfortable, it's worn out. So I tend to walk round in knackered-looking shoes all the time because I can't face the long process of adjusting to new ones.

couchcritter · 19/09/2022 14:45

If I find a pair of shoes or clothes I like, I buy every pair I can find and rotate them as much as possible, hoping by the time they wear out I'll have found something else.

For example I have about 10 pairs of discontinued Hotter shoes from eBay; four discontinued Bravissimo shirts; about six identical Hollister jeggings. I'm sure some people think I never change my clothes which probably isn't ideal.

(Ironically I recently got fitted for some proper orthopaedic shoes and can no longer use the above of course. I should sell them on but also have problems with hoarding and "what if I need them" - probably subject for another whole thread there...)