What prompted you to seek out a diagnosis as an adult? Did having official recognition that you were autistic have a big impact on your life, and if so, in what ways?

Hi @witchesgoose thank you for starting this thread.

My son is 21 and also has autism. He has severe social anxiety. If you have experienced this, would you mind sharing how you managed or overcame it please?

I know every autistic person is different and in different circumstances but I just want to know if you are happy?

I worry that all the extra stuff my child has to deal with will make it hard for him to be content as an adult and what kind of support he will need from us.

Also, he never says I love you to me. I think he does but it hurts not having a conventional connection. I do work hard to see it from his perspective as I know life is very different for him . Do you think he knows how much I love him?

Thanks in advance

Thank you, this is really interesting. My question relates to anxiety and, particularly, meltdowns and regulating emotions. My daughter (aged 12) is autistic and regularly takes her frustrations out on me at home, after masking at school. She can be quite violent, and it's a behaviour we're working on to try and ensure she has down time and that her triggers are reduced. I was wondering whether you struggled with this as a child/teen and, if so, whether - or how - you were able to manage it? Worth mentioning that my daughter also has a learning disability and a stammer, which can cause extra frustrations.

What do you think of people who self diagnose as autistic?

Thank you OP.

I'd say we try our best not to change him, in fact we're currently in a battle with his school who aren't giving him the right support because they don't see that it's their job to accommodate him not the other way around!

My 18yo dd was diagnosed privately at age 15, and has really struggled since leaving school. She hasn't been able to settle into anything since. (Worldwide pandemic and lockdown didn't help!)

My instinct is to let her take some time out and find her feet, but I worry about how she will support herself as she gets older, especially as all education programmes and support js geared for this age group. I'm not sure how her future will pan out, but right now she struggles to even leave her room for any length of time. I'm seeking out counselling for her, but if you have any words of wisdom I'd be happy to hear it.

Hi @witchesgoose… My 17y/o Ds has just been diagnosed. I have known since she was little, but there were many factors that obstructed diagnosis (DH in denial, living overseas/language barrier, multiple moves when we returned, super-masking abilities, etc.) Stereotypical super-high achiever academically, but awkward socially. (She toe-walks, hates eye-contact, has a hard time with non-verbal cues, can’t “read the room” as well as she should and finds “peopleing” either exhausting or a waste of her time. She also stunned me recently by explaining that she completely lacks the ability to visualize anything at all, which explains why she’s so very literal sometimes, I guess.) I ended up ignoring her dad and seeking diagnosis when she kept repeating the same patterns socially and being badly hurt by friends. (Always B-listed) I felt that she was too vulnerable in that area to move away from home. (Fortunately we have another year before that happens here in Aus.) However, unlike you, she is in denial of the diagnosis. She doesn’t think that her moods or control issues are a problem - for her. She is seeing a counsellor (who is fabulous) as a compromise because she won’t go to the specialist ASD program over the summer (here) run specifically for girls her age. She is telling the counsellor that she hasn’t got ASD, but is overwhelmed with the stress of organization, etc at school. (That’s not a problem for her - she’s projecting.) Any hints on how to help her? She knows she’s loved and accepted. We don’t bang on about it at all. She knows we’re proud of WHO she is not just what she can do. Gaaaah!

Thank you, I will look into it. Anything to help the school step up!

Do you worry about having a very limited set of life experience? I worry about DS25 who is likely to live independently, go to work, come home, but not much else. At the moment he lives with us. He has a friend he sees maybe once a month. He does all shopping online. If he lives alone (away from us), he'll only leave the house for work and for an occasional trip to the cinema with his friend. If his friend moves, that would be it.

I worry he'll be isolated and eventually unhappy, but unable to change his circumstances.

He only tends to do things when encouraged/instructed by us. He was in a job he didn't like, but wouldn't look for a different one. I saw a job perfect for him, told him to apply, sent him the information etc. I worry that without someone telling him, he won't make any changes. He also gets taken advantage of by employers.

Thanks for your reply to my question about meltdowns, @witchesgoose. It's really enlightening to hear about your experiences. I never punish my daughter for having a meltdown, but I definitely needed to hear about your experience, as a reminder to remove the demands and pressures that may lead to overwhelm.

OP thanks so much for this!

I have recently realised my SIL may well be autistic. I actually suspect I'm not alone in this thought. I'd be surprised if she doesn't think so herself as, contrary to the stereotype, she's very reflective- perhaps overly reflective.

There are a number of reasons I think this- but actually a lot of it's really sad. She spends ages before social situations preparing questions to ask people, for example. She told me this one day as though it was normal- but since then it's been really obvious to me that she has 'coping strategies' like this for all social situations. They work really well and people think she's awesome- BUT, she can't sustain it and usually goes to bed at 9. Or if a social situation happens spontaneously she often doesn't attend or goes a bit nuts. She growled at me like an actual animal once, for example, because it was raining and we changed the time for a walk. I've seen her bashing her hands against a wall/ crying etc following fairly normal (and not particularly unpleasant) incidents.

Anyhow, there are loads of other things- but she also hasn't been able to have a normal job interacting with people.

My preferred plan is to say nothing- but occasionally I wonder whether she might be happier if she got a diagnosis. I do think she's miserable a lot, and feels like she's the weird one......I'm not sure she is though. If I'm right, then every single one of her odd behaviours is actually not her fault- and we probably made it worse. Have you got any advice?

How long did it take you to get a diagnosis please? The NHS website on adult autism says there can be lengthy waits for assessment. Just at the start of this, having an assessment for my DC and realising how many of their behaviours mirror mine.

I detest self diagnosis. I see so many people who self dx (or self dx their child) because they have some traits but not enough for a diagnosis.

What it does is give society a false view of the difficulties of those who have been assessed, met the stringent criteria and been given an official diagnosis.

Society ends up with the impression that autism is just feeling uncomfortable in crowds and being literal. It allows society to have unrealistic expectations of autistic individuals to manage because they read numerous accounts of self dx people who hold stressful jobs, have partners and families, “have” to socialise but just manage etc etc. The self dx community provide such a damaging narratively autism to the autistic community IMO.