advice on parenting neurodiverse young adults

I'd say do both.  If he's asking for a diagnosis, it could be beneficial so get him on the waiting list but also seek support in the mean time.

I am in a similar but slightly different situation in that my 17 year old is undiagnosed but he has asked for a diagnosis. I am considering not getting him diagnosed but jumping straight to getting him the support that he needs. Trying to get him diagnosed through the NHS is going to take a long time and I think he shows all the obvious traits. Rather than him struggling while waiting to get the obvious outcome I am thinking of getting him some counselling support to help him cope with the way he is feeling. I am just not sure how I get the specialised therapy that I think he needs. Do you think that this might work for your children? Focus on the issues that they are struggling with rather than the diagnosis? Not sure but just thought I would explain my situation to see if it helped.

If there are any parents with experience that could shed any light on whether this is a good approach and ideas on where to get the right therapy it would be much appreciated. Thanks

My daughter has found the accommodations she has received at university very useful indeed. She thinks that without them, she would probably have dropped out. She is intellectually very strong - averaging 94% in her chemistry degree second year exams and assessments - so admitting that you need some support is not a reflection on intellect.

I am also autistic - diagnosed at 59 years - for most of my life, I'm a retired biomedical research scientist, I thought that most people had similar problems to me, but were just much better at dealing with them. I now know that the problems I have on a daily basis just do not exist for most people. Being moderately successful in the world as it exists, managing to function in a society that is inimical to me, is a major triumph for an autistic person and any help I can get to make it a little easier is very welcome. 

NAS84158 said:

can anyone advise me whether HFA is a 'non-PC' term,

If by this you mean it's not recognised in the official DSM anymore then yes HFA is a "non-PC term". It's not recognised by the World Health Organisations ICD-10 and 11 either. Asperger Syndrome also went out in 2013 (DSM-5) and 2022 (ICD-11) and wouldn't be the recognised diagnosis now either. It's all just Autism on a spectrum.

NAS84158 said:

and if it is, how do we differentiate succinctly  about whether we are talking about people with extremely severe communication and functioning difficulties, and people like my family who are largely able to 'pas'', albeit with some obvious difficulties.

By saying:

NAS84158 said:

we are talking about people with extremely severe communication and functioning difficulties, and people like my family who are largely able to 'pas'', albeit with some obvious difficulties.

I don't mean to sound blunt but I don't know how else to explain you've answered your own question.

Thanks @Catlover. I've read quite a few of your posts now and I find your approach very sensible.

Thanks for the advice just to keep asking questions. I struggle with knowing when I'm oversharing/being told to shut up, so do feel free to ignore this post if that is appropriate.

I don't know what to do. For example, yesterday, when me, Dad and 18yo went back to work/school after Christmas break, 22 year old went into 18yo's room and apparently tried to hang himself. It was all very performative - he was in a happy jolly mood when we came home (my parents had come round unexpectedly). But he's left 18yo's room in a mess, to be sure that we knew what had happened.

22yo shouldn't have been stressed - he hadn't had to go back to uni/ had been stable for a few days and was apparently regretting his pre-Christmas actions/was making plans for the immediate and middle range future/had an appointment with the GP scheduled.

18 year old has more and more cuts on their arms. Before Christmas I was being called by school at least twice a week because of self harm at school.  Had a second appointment with CAMHS yesterday ( doesn't share any of  the discussions with me, obviously).

22 year old doesn't know about 18 year old's self harm.  18 year old keeps saying that 22 year old keeps behaving badly and getting away with it. Obviously, 22 yo's actions are impacting on 18 yo's mental health

Both children keep putting themselves under more and more pressure (eg 18 year old is insisting on taking grade 8 exam, alongside doing 5 A levels, and requiring surgery for a recurrent benign tumour). but are very resistant to the idea that doing less might be helpful

Obviously everyone's problems are interplaying into everyone else's. It seems wrong that we're not talking about any of this as a family. but both children, and their dad, are very resistant to the idea of therapy.

So, I guess my questions are:-

1) Do I force a situation where we all talk about eachother's feelings and behaviours? It feels wrong, given that everyone is resistant to it, and seems likely to precipitate meltdowns

2) do I withdraw from 22 year old emotionally? He seems to be acting out to get attention ( and Dad is giving him attention for his behaviours). I'm always treading on eggshells and don't know what's going to precipitate the next outburst. Again, it feels wrong to withdraw, but also I want him to recognise when his behaviour is unreasonable, and having some responsibility towards others. I know that doesn't come naturally to people with AS, but can't he apply some of his amazing cognitive intellect to learning some appropriate emotional actions and responses.

3) thanks @Martin for the advice around providing positive role models of people with AS - I do feel I've done that throughout their life, both with public figures, and people we know closely. this has led to them teasing me that I think everyone is autistic, and being resistant to accepting their own very obvious traits. I've also tried to demonstrate the potential advntages of a diagnosis - eg if you find change difficult, if you have a diagnosis, people make reasonable adjustments, but if you don't they just think you're being difficult. but they are very resistant to this being an appropriate way forward. I suppose my questions are a) does anyone have examples of benefits for HFA receiving a diagnosis b) any tips on how to support  my family to get a diagnosis and support

4) I've googled a 'parenting autistic adults and seen a range of advice books. But I presume that most of these books are aimed at young adults with more obvious AS/difficulties than my children. does anyone know any resources for parents of young adults with HFA which may be useful?

BTW - my 18 yo says the concept of HFA is reactionary, that we shouldn't be talking about people's functioning. but they have very strong, fixed ideas about many things, not necessarily supported by anyone else. can anyone advise me whether HFA is a 'non-PC' term, and if it is, how do we differentiate succinctly  about whether we are talking about people with extremely severe communication and functioning difficulties, and people like my family who are largely able to 'pas'', albeit with some obvious difficulties.

sorry for the long rambling post - I'm extremely new to this area, and to asking for support in general

Unfortunately because everything is so medicalised a lot of the more substantial services are gatekept by having a diagnosis or not. Ultimately you can't force them to get diagnosed or accept the support that is available but if you make sure they know they are loved unconditionally regardless of what a diagnosis could say and that there is nothing wrong with them- because that's what it is, people who are made to feel like there is something wrong with them are less likely to get it "validated" by a diagnosis because they are worried they will be seen as worth less as a people for it. Then let them do their wn research into the pros and cons of diagnosis and/or support and maybe they will come around to it themselves if that's what they want to do.

Bombard them with positive facts about neurodiversity and positive neurodiverse role models. Their main difficulty seems to be one of acceptance and this probably stems from a very negative view of neurodiversity.

As an autistic person, with an autistic child of 18, I think I can say that there isn’t much help available. There are groups and communities to be found which might prove helpful, but a lot of the process is about learning about oneself.

The outbursts are meltdowns, which are caused by getting overwhelmed, frustrated, stressed or overtired. Your children need to find ways to cope better, so that they ‘might ‘ be able to predict a meltdown, or at least lessen their occurrence. Stimming can help. But honestly, you need to encourage your children to pace themselves.

You say they are high achieving. This comes at great cost to them. Life is difficult and exhausting ‘inside’ and you might not see that. They probably don’t see it. It’s all about trying to give yourself plenty of downtime.

I don’t know if that’s helpful or not, but just keeping asking questions and someone will have something helpful to contribute.