I’m autistic AMA

[EbbyEbs]

Diagnosed at 39. AMA

[StudentNurse3]

@Choopi

Oh that's a good one. Can I also add do people have trouble reading your tone of voice/do you have trouble reading others. Dh has ASD and one of the biggest things we clash with is facial expressions, tone of voice, raised voices. He doesn't get when I'm messing around, sometimes he is loud and angry sounding but he says he isn't and doesnt understandstand why u would think he is, it can all be very confusing tbh.

It's not just me then! I am autistic and often have problems where people think I'm angry or annoyed when I'm not! I don't really know how to make my face look how it should! I also speak really quietly when stressed/upset or loud when annoyed/excited but I don't realise I'm doing it!

[Choopi]

@StudentNurse3

Do you find that people misinterpret your facial expressions? Also do you have a problem with the volume of your voice - like speaking too quietly or too loudly but not realising?

Oh that's a good one. Can I also add do people have trouble reading your tone of voice/do you have trouble reading others. Dh has ASD and one of the biggest things we clash with is facial expressions, tone of voice, raised voices. He doesn't get when I'm messing around, sometimes he is loud and angry sounding but he says he isn't and doesnt understandstand why u would think he is, it can all be very confusing tbh.

[StudentNurse3]

Do you find that people misinterpret your facial expressions? Also do you have a problem with the volume of your voice - like speaking too quietly or too loudly but not realising?

[EbbyEbs]

@DancesWithFelines

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).

Grief and loss is a strange one for me, it doesn’t hit me at first … in fact it only really hits me when I start to miss them. I had a rabbit who died and it didn’t effect me at first … it was only weeks later when the memory of her little ears and huge eyes started to creep into my head and I was in bits. I’m honestly dreading the day I lose my dog because she’s my whole life, I predict I will start to miss her instantly and it will hit me like a ton of bricks. If your son is anything like me, he won’t thank you for trying to help him with this, I’m a very private person with my emotions and I’d much rather sit and cry by myself than talk it through with someone.

With regards to washing, I’m the opposite. I can’t stand the feeling of being dirty or sweaty so I shower twice a day, more during summer

[EbbyEbs]

@Baystard

Would you describe yourself as extrovert or introvert? Do you prefer engaging socially with men or women?

A common personality profile tool tells me I'm extraverted but I'm struggle to agree as I try to avoid social situations where I'd need to chat. However I wonder if I'm naturally extraverted but the effort of masking means I often avoid social situations entirely.

I've always preferred talking to men and I wonder if it's because men do less 'chit chat'.

Definitely introvert. Make or female doesn’t really matter to me although I do find men harder to read

[BruisedSkies]

@EbbyEbs

Honestly I’ve never really thought about it but I totally see where you’re coming from. It’s like back in the day people would believe anything - if someone accused someone of witchcraft that poor person was automatically guilty - no proof needed. Look at the Pendle Hill witch trials - then we became more educated and realised that unless something was said from a reasonable source … it wasn’t necessarily true.

However, now we have the internet and anyone can say anything, the added protection of anonymity means people can start any kind of rumour or conspiracy with no consequence and people blindly believe it “because they saw it on Reddit”

TickTok is a great example, there are a number of people posting videos of the royal family that “prove” they’re not human (seriously!) … people get really taken in by it and look for other “proof videos” and will find them … it confirms it for them …

Another example I saw last night, someone had photoshopped Philip Schofield giving the finger to the camera at the queens coffin. The amount of people who thought it was a genuine photo was frightening, people calling for him to be sacked and held accountable for his behaviour … so many parallels to the Pendle Witch trials

Thank you! That’s totally what I mean! It’s been something I’ve been thinking about for a while. How it feels like we’re actually going backwards with all the conspiracy theories and witch hunts. It’s just all online rather than in person gossip. Maybe it just shows that humanity hasn’t really changed that much in however many hundreds/thousands of years.

I’m going to look up the witch hunts you mention and think about it some more. And what dog breeds used to look like.

[user1583920194858592910103848559201]

I was diagnosed late teens (nearly 40 now)

It's been difficult. No one understood and I find now that people try to understand kids with autism but not adults, almost like we grow out of it. Do you feel similar to that op?

[EbbyEbs]

@Chakraleaf

I'm 33 and have asd and adhd. Hi :)

I’m awaiting assessment for ADHD - can I ask what your traits are?

[Punxsutawney]

pretending to be someone you're not on a first date. Is nothing like autistic masking.....

[EbbyEbs]

@BryceQuinlanTheFirst

What was your relationship like with your parents? nd what do you wish they'd done differently? And what is your relationship now?

Both were very much of the opinion that you should just “fit in”. Autism wasn’t really spoken about in the 80s and you only had the likes of “Rainman” as an example. My dad died when I was young but my mum was very much all about her own needs. She was obsessed with becoming married again so would be constantly fascinating over whoever her boyfriend was at the time. She once left me on my birthday to be with a new boyfriend so yeah, it wasn’t the best relationship.
She was also easily embarrassed and would join in with others who said I needed to grow up and act my age.

I have one memory of talking to her about musketeers and the ninja turtles, she was acting really interested in it and being really nice about it. The next day I brought it up at a relatives house and the adults all rolled their eyes and said I was far too old to be thinking about ninja turtles … I looked at my mum for support and she said “oh fancy being into ninja turtles at your age! It’s very babyish!” 😱😭

[EbbyEbs]

@Halloumiforever

What's the difference between being autistic and just having different personalities? I ask this because as a teacher I come across young people on the spectrum regularly. Now some teenagers with severe autism I can tell immediately they are autistic with how they interact with people and their meltdowns. So I'm not denying it exists. But other children on the spectrum I would honestly think they were 'normal', they just have some personality quirks. There is an increase in autism diagnoses over the past few years but the majority are borderline cases/low end of the spectrum.
I myself have struggled maintaining friendships. I just prefer to spend time alone doing my own thing, but I'm not autistic. I get obsessed with TV shows, particularly history. I would love to talk about king Alfred or the Viking invasions with people. But to me that is just a keen interest, it doesn't mean I'm autistic. Some people are obsessed with hair and beauty, some people are obsessed by castles, because we all have different interests. I don't like particular noises or clothing for various reasons, but doesn't everyone? So I have quite a few of the typical autistic traits that you've described but I don't think I'm autistic. So how do you know you're autistic and not just someone with an unusual personality? I get that some people mask and pretend to fit in, but again I think lots of normal people do that to some extent. E.g. faking it on an interview or pretending to be someone you're not on a first date.

As a teacher I really suggest you learn more about autism

[EbbyEbs]

@BruisedSkies

Another question, but this one is about your special interest of Medieval times. I don’t know but about it but have this vague sense of it.

So, what parallels do you think there are between the information on internet today and information in Medieval times? I’m thinking about ‘witch hunts’ being similar to destroying people online coz of a rumour or a tweet from years ago.

Also, so many conspiracy theories, similar to medieval times and how rumours would have spread then through gossip. Also, so much misinformation online.

So sometimes I feel that the volume of unreliable information these days, has actually put us back into the dark ages with regards to knowledge.

Do you agree?

Honestly I’ve never really thought about it but I totally see where you’re coming from. It’s like back in the day people would believe anything - if someone accused someone of witchcraft that poor person was automatically guilty - no proof needed. Look at the Pendle Hill witch trials - then we became more educated and realised that unless something was said from a reasonable source … it wasn’t necessarily true.

However, now we have the internet and anyone can say anything, the added protection of anonymity means people can start any kind of rumour or conspiracy with no consequence and people blindly believe it “because they saw it on Reddit”

TickTok is a great example, there are a number of people posting videos of the royal family that “prove” they’re not human (seriously!) … people get really taken in by it and look for other “proof videos” and will find them … it confirms it for them …

Another example I saw last night, someone had photoshopped Philip Schofield giving the finger to the camera at the queens coffin. The amount of people who thought it was a genuine photo was frightening, people calling for him to be sacked and held accountable for his behaviour … so many parallels to the Pendle Witch trials

[EbbyEbs]

@funkythighcollector

Did you make a conscious decision to mask or was it something you started doing without realising what it was? Did you ever think masking was what everyone does, if so when did you realise it wasn’t? How did your special interest come about, do you ever abandon interests or do they interest you for a long time? If you meet a neurotypical person with the same special interest, is it a similar conversation/experience as talking to another autistic person about it, or not as interesting?

Masking started happening natural when I was very young when I realised people thought I was weird. I didn’t consciously decide to act different, I just learnt not to talk about certain things and to not flap around or people would laugh etc

I suppose I did think everyone else was masking (or pretending) for a while because as a child your own reality is what you assume everyone else’s reality is. It was only as I started getting older that I realised others didn’t have the same difficulties as me and didn’t need to pretend.

My special interest in dogs has been there for as long as I can remember so I’m not sure why it came about … my other special interests tend to come about once I get sucked into rabbit holes or from watching movies. One of my favourite films was always “Oliver!” and that got me obsessed with Victorian Britain for example. Most don’t last too long, I suddenly get bored of them and move onto something else (apart from dogs, that is a lifetime thing).

A neurotypical person with an interest in dogs would have me engaged for as long as they’re willing to discuss it 😂 I often find that a neurotypical with the same special interests as me get bored of talking about it way earlier than I do.

Example: me and “Jane” start discussing dogs … we’re getting on Great and Jane tells me all about the Rottweiler she had growing up. We talk and talk … I think “this is going great!!”

An hour later:
me: “did you also know that Rottweilers initially had their tails cropped so it didn’t Waff in the meat whilst pulling butchers carts?”
Jane “no, I didn’t know that”
Me: “and isn’t it interesting that the Dobermann is the only dog breed ever to have been bred specifically for the purpose of protecting a human?”
Jane: “oh really? Didn’t know that”
Me: “You know, French bulldogs originally looked like Staffordshire bull terriers? Here - I have some pictures from the early 1900s … “
Jane: “umm yeah … that interesting
Me: “I also have pictures of the original German shepherd breed standard … here .. “
Jane “oh yeah, nice pics - anyway I really must be getting on … “
Me: “hold on, I have pics of the original Dobermann breed type too … “
Jane: “great, I really have to go now though”
Me: “shall I email you them?”
Jane: “yeah if you want … “

Me and Jane don’t talk about dogs anymore 😂

[EbbyEbs]

@GameBoy

Do you have any additional diagnoses e.g. ADHD/dyslexia?
In what way has it helped to get a diagnosis, if it is mostly confirming what you can already recognise through your behaviour/reactions to things etc?

DS (20) has a diagnosis of dyslexia, but I observe a lot of the traits you describe:

• obsessive interest in certain subjects
• masking behaviour in social situations and burnout and meltdown afterwards
• sensitivity to noise, smells, textures, foods

He has a girlfriend with ADHD and has commented that he recognises a lot of similarities and has vaguely mentioned getting a rediagnosis.

If you were your 20 year old self again would you have preferred to have been diagnosed earlier? What difference might it make?

I have no other diagnosed conditions but I’m currently on the waiting list for ADHD assessment. It’s a very common co-morbidity. I honestly wish I was diagnosed as a child but in the 80s a girl who masked well had no chance of being diagnosed. It would have made my life so much easier, I wouldn’t have felt the need to put myself in uncomfortable situations all the time to “act normal” and I would have given up on the notion of “friends” sooner too and found peace with who I was so much earlier.

[EbbyEbs]

@Sparklybutold

My husband is awaiting confirmation of his likely autistic diagnosis, as is my son.

How can I best support them?

Do you believe he is autistic? I only ask because when I was awaiting diagnosis I was forever getting told by everyone around me that “no way are you autistic!” and that was the hardest thing so I would say give him the validation now that a diagnosis will give him. Acknowledge his traits, let him talk about it. I got lots of eye rolling whenever I brought it up with anyone so i felt very alone with it. Tell him the autistic traits you like about him and most importantly assure him that a diagnosis either way will not change how you feel about him.

[EbbyEbs]

@midlifecrash

If you meet someone else with strong interests, which are different to your own - say trains, or penguins, or WW2 - do you find this can be interesting? As in a better basis for conversation than chit chat

Not really, I find it very difficult to move away from my own interests. One of my friends has a strong interest in beauty therapy and she’s very knowledgeable about it and will try to info dump on me but I really can’t develop any interest for it and tend to switch off when she starts going on about it.
Someone else I know has a strong interest in cats and will try to tell me all about them - I just can’t share their enthusiasm as I’m not a fan of cats and will again switch off.

[EbbyEbs]

@Whatdayisittodayhelp

Hi I find it really sad that people have to be diagnosed to understand who they really are. Did you get a diagnosis purely for this and for validation of why you have struggled your whole life or for something else. Things like adhd can be helped with medication not like autism. I’m asking this as my friend is waiting on assessment and she is so stressed that she won’t be diagnosed but she is still the same person no matter the outcome and it’s not going to change her either way she is who she is. Thanks

Yes, I had to know why, after 37 years of constantly been told I was “weird” that there was a reason behind it. Once I had that reason my mindset completely changed. I became instantly comfortable with who I was. Yes I’m still “weird” but I’m also autistic. I’m incredibly glad I got my diagnosis.

[felulageller]

I've learned to give the names for these issues so it's easier to explain to people. Eg I struggle with washing because of 'transitions' and struggle with clothes due to hypersensitivity.

I can now easier predict meltdowns as they tend to come after routine changes.

[EveryFlightBeginsWithAFall]

My 9 year old obviously feels the same he said earlier, I don't like having a bath but then I'm in it and wet and it's fine. Then I have to get out again .

[EveryFlightBeginsWithAFall]

@ClumpingBambooIsALie

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.

I can relate to all of this! It's also not something I admit to irl

[Itsmeagainyes]

@couchcritter

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...)

I do this too. I have multiples of so many items.

[couchcritter]

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...)

[BoardLikeAMirror]

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.

[Lilgamesh2]

@ClumpingBambooIsALie thank you, this is so insightful.

[ofwarren]

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.