I’m autistic AMA

[EbbyEbs]

Diagnosed at 39. AMA

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?

Autism or subthreshold autistic-like traits are extremely common in hyperlexics.

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?

Thanks @ofwarren and the other people who explained masking with examples. It’s what I thought it was but it’s super helpful to have real life situations.

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?

I agree, it's appalling that people can be this stupid and also downright insensitive.

Well done on responding in better grace than I could have mustered OP.

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.

I have the same question as another poster, what should I be doing to support someone with autism?

Is there anything you wish everyone knew that would make your life easier?

I'm talking about both privately and in the workplace.

@Halloumiforever this might help you understand more: https://www.autism.org.uk/advice-and-guidance/what-is-autism

You need to get to know what that one individual needs, and do that.

The only thing I can really say is to accept them as they are, take them as they come.

If you've met one autistic person, you've met one autistic person!

If your autistic friend/colleague reacts or behaves in an unexpected way, don't assume they are being, e.g. pedantic or awkward or trying to make trouble - accept their behaviour as part of the person they are.

@ThirtyThreeTrees if I've come to some social event, it took a lot of energy and was probably painful to remain there, now I need at least a couple of days to recharge. Please don't message or call or invite me to anything else for a while.

If I try to talk to someone, it's because I need some positive human interaction, and my attempt at being pleasant and chatty will feel a lot more big to me than anyone ever interprets it. In fact I think I come across as cold or not wanting to talk even when I do make an attempt. Then I feel bad that it wasn't reciprocated when I tried. Ask me something interesting like what have I been watching on Netflix lately, rather than just the weather etc. That I find easier than Smalltalk. But also don't try to start a conversation every time you see me. Similar to the point above, I burn out and when I'm done I'm done and need time.

Your description of your son sounds a lot like DD at the same age. I found the gap really started to close after she started school. Her language improved, social skills improved etc. Unfortunately we then had a massive gap in schooling due to covid, but she's 8 now and has friends, does well in school, and is no longer getting any extra help (she did physio, speech therapy etc.) Her social skills still aren't great and she falls out with friends easily (she gets frustrated with them and they with her), but we're working on that! It's so hard to anticipate the future when a child is only 2.5, but it sounds like you're on the right track.

Thanks everyone who answered. I know it's very difficult to give an answer that applies to everyone. @jewishmum, that's very helpful, thank you.

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

I would like to know this too please

My relationship with my parents (as a child) was very much of its time - 1970s/80s 'seen and not heard'. I was severely punished (corporal punishment) for things I now see as autistic behaviours but back then, the ordinary working class family like mine wouldn't have heard of autism so I can't really blame them - corporal punishment was normal in schools back then (but I was a model pupil so only ever got punished at home when my mask slipped).

I've generally had a good relationship with them as an adult - usual ups and downs but nothing serious. They don't know about my diagnosis - they are old and feeble now and it would just confuse them.

What do I wish they had done differently? Not used corporal punishment; tried to get to the bottom of some of my 'challenging' behaviours instead of treating it as deliberate naughtiness.

Generally I wish when I was a child, there had been the autism awareness there is now, in 2022. I get so angry when people talk about autism being over-diagnosed nowadays - if those people had had to grow up and navigate childhood, adolescence and adulthood up to middle age with no diagnosis, they would soon see things differently.

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

Thank you for sharing. That sounds very tough though it's amazing you're so compassionate about your parents after it sounds like they didn't understand you.

My son is autistic but just little, I'm constantly trying to learn and read to become the best parent I can be and understand what he's trying to convey to us. At the moment we are his world and he doesn't care about anyone else at all, it's so lovely to have such a special bond but terrifying at the same time.

Hi one of my dc have been diagnosed and their SALT has said I show many autistic traits so has referred me for assessment, there is a two year wait. When did you get diagnosed and do you think a diagnosis will help me in anyway as an adult? Im just going along with it but I have always struggled at work and get overwhelmed but my hyper focus means I come across as a good employee but behind the scenes it’s torture for me, not sure if it’s asd or adhd although the salt thinks it’s more asd. Just wondering if you have been given any support or does it help having the diagnosis to help accept who you are?

Thanks for starting this thread OP, at the age of 37 I've just been referred for an autism assessment and mostly everything you've said rings true for me.

Struggling with friendships especially and the small talk (I'd be so much more up for having a discussion about Chillingham castle over 'normal' boring stuff any day!) I'm able to listen to podcasts on my earphones at work and have stopped telling people the truth when they ask what I'm listening to as usually I get an odd look as it's usually history or murder related.

Also resonate with the thing you mentioned about others getting injured, it makes me seem cold so I pretend to care whereas mostly I don't unless it's someone close to me.

Luckily my DH tolerates me very well and says my 'quirkiness' is what made him interested in me.

I'm hoping that a proper diagnosis will give me some closure and acceptance that I'm not just a horrible person.

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'.

Do you feel your diagnosis has helped you, and if so how?

I am in my 40s and very much suspect I am autistic. I score highly on the AQ test. Have suspected for years but since DS was diagnosed I suspect more and more. A few people I have spoken to say there is no point in getting diagnosed at my age because I have a job and friends and it wouldn't do me any good I have suffered from anxiety and eating disorders for years. I do have friends and they are all very long term. I am hopeless with people I don't know and don't understand when it is my turn to talk. I also have many special interests and some sensory issues. I can also hear electricity and things like cat scarers that people usually can't hear.

One of my big worries about not being diagnosed is what happens when you are old and need care? Imagine not having your sensory needs respected in an old people's home?
Even an admission to hospital is much more pleasant with a diagnosis as you get a hospital passport thing where you can say what your accommodations are.

On a day to day basis, it's just about knowing who you are and why you think the way you do.

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).