Highly Sensitive Person and Autism

Your kids sound somewhat like me Jenny. I've been through more social states in my life though so maybe there's hope for them yet.  I didn't start being intimate with others till my late 20's.  And i wasn't heavily social till i was 30.  I'm now back in Hikikomori mode .   I hope i'm not oversharing i just wanted to give you some hope for the future for your kids.  I haven't given completely up on myself yet either.  It's really difficult but you just have to force yourself out there again again into what is often certain pain.

Actually i think i just assumed you were talking about your adult children in your final paragraph. If you were not then i've got the wrong end of the stick.  Anyhow what i wrote about we reclusive autists still makes sense.

It leaves me a raw nerve. Scared to engage a lot of time. Even online.  Especially online sometimes.  I think often online there's even more potential for misunderstanding.

Many thanks.  I've spoken to a number of people about this and there's apparently little that can be done other than what we're already doing.   

I'd really like advice and guidance (not counselling) from an autistic practitioner with a lot of experience working with families and young adults.  Someone who is prepared to work with the parents rather than the young adults who won't engage anyway, so this probably means it wouldn't work because of issues around confidentiality and autonomy.    

That's true.  But we're still left with our horrendous stalemate situation here so I'm not only left with the consequences but also my inability to do anything about them.  

I am holding things steady, ready to listen, supportive and open to follow up on anything they request which might be useful.  But it all feels like too little too late and the level of damage is beyond belief.  In the past I would have assumed that this level of harm could only be caused by cruel, violent, negligent parents but apparently it can be caused by passive, ignorant, well-intended but ultimately misguided parents who hadn't yet realised that many of their own difficulties were down to unidentified and unsupported neurodivergence.  

Meanwhile local autism charities offer parent support groups (usually for parents of younger children), 1:1 sessions for newly diagnosed adults (I had these myself and they were rubbish), plus a whole host of advice and guidance for entering the workplace or joining social groups (often geared toward those under 25s who will engage).  Nothing at all for families in which all members are adults over 25 and in which the young adults are in profound "hikikomori" states with huge personal hygiene problems, an unwillingness or inability to engage, massive anger issues and for whom jobs and socialising mean very little considering they feel unsafe just leaving their rooms.     

It all sounds awful and familiar about how university went in the 1980s for me.

I hope you find some help somewhere for all this, I'm not sure what I can say or do to help, apart from listen  

I don't think anyone's parenting is perfect. We're all just doing our best and the fact that you are worrying about what you did and how you parented shows you are a good parent. If you weren't, you'd be saying 'oh well, who cares'.

Ah, it is simply a statement of fact that I let my family down.  I didn't know any better and it was really almost bound to happen, given our past, our neurology, and the pressures bearing down on us.  You can't offer what you don't have.  I don't feel guilty, just angry, upset and actually quite devastated at what has happened. 

And now I feel very frustrated and almost impotent at not being able to find any services that can help.  I'll keep trying, of course, but, although it's not my fault,  my parenting clearly hasn't been the best. 

Both male.  Both highly intelligent and meeting all their targets academically.  But my own lack of identification and support probably related to me being female and masking from a  very early age.  It never felt safe enough to just be myself out there.  

My dad had lifelong problems, including a major breakdown/burnout that lasted for years and utterly blighted our teenage years with no help or support other than massive diazepam tablets (unlike the tiny ones they dole out these days) that made him sleep half of his life away.  And, when we saw various MH professionals in connection withour sons, they specifically asked about family background.  I didn't hold back.  Yet still, autism wasn't mentioned. 

Generic, one-size-fits-all therapy was offered plus an increasing range of psychiatric drugs that didn't work but caused massive weight gain (with an obvious associated dent to ideas of self worth and self esteem for a young man just starting out) and this pattern lasted for nearly 4 years.  They then discharged us on the basis that there was no evidence of mental illness, only autism.  The autism team to which they referred us was just a diagnostic service though, and unable to offer any help to parents of adults.  After all of their negative experiences, my sons now won't engage with services at all.  So it's down to us.  

For those who don't get family help when their kids are under 18, I honestly don't know where we're supposed to turn.   We are stuck.  

And yes, university in the 80s was a bad experience for me too.  I passed all the exams with flying colours but, given my family background (incl. extreme isolation throughout my teenage years because of our dad's poor health), I couldn't cope socially and nearly drank myself to death over the 4 year course.  And, to cap it all, got blamed for my behaviours.  Then started work unequipped to deal with basic stuff like answering phones or attending meetings or even just exchanging pleasantries with others in the office.  

If anything, though, my sons' experiences have been even worse.  Imagine doing a psychology (!) degree at a prestigious university, not being able to cope with socialising, attending tutorials, arranging meetings with tutors and getting work in on time and just getting blamed for it instead of helped.  Nobody sees the struggle, everybody pulls you up for not participating fully or not dealing with issues of which you have little knowledge because the magic word (autism) hasn't been broached.    So your attendence falls, so does your performance and you take more than one gap year, miss exams and have to appeal to get back on the course.  Then fail again and eventually leave with very little apart from debt.  At least my course was fully funded via the council grant system.  Now student loans are pursuing us for an overpayment too.  But i've spent most of our money of getting private help because NHS waits were too long once we'd finally realised that we're autistic but needed some corroboration.  

Try as I might, I don't know where to get help with any of this.  They either provide services for the under 25s (our youngest age of diagnosis is 26) and/or they suggest waiting until the person themselves is willing/able to engage.  That'll be a long wait then.   They don't deal with parents.  :(  

That is a terrible situation, unbelievable that no one mentioned autism. I'm really sorry you have to cope with all that, it's extremely difficult when you get zero help. It sounds like me when I went to university in fact. I was okay at school but when I was miles from home and family, struggling to cope with new situations, new people, new emotions, I had a complete meltdown and fell apart.

I hoped that the situation for students in education had improved since then (I went to university in the 1980s) but it seems not!

Are your children male or female? I feel like people used to think autism didn't affect females, it's only recently they've accepted that it does. And not everyone accepts it. There is a page on NAS discussing how autism in girls is still not accepted by major organisations. So maybe you were unlucky that you met the people who don't believe autism exists in females. That doesn't help but it sounds like what happened.

You'd have to ask the people running the HSP websites why they don't mention autism, that's beyond my knowledge of it.

Yes, much seems to depend on luck.  In our case nobody mentioned autism, in spite of me expressing concerns about all round/social development more than once with different teachers.  And, in my own case, I went through several rounds of therapy and even trained as a counsellor myself - not one of my tutors nor peer group ever raised the possibility of neurodivergence. 

Now I have 2 adults in their 20s with quite severe issues and nobody can help us.  Severe, chronic burnout, extreme rage (some of this at not being identified earlier on, when it might have made more of a difference), EF difficulties, little to no engagement with services or indeed anything outside the home, and on and on.  Most of these issues only became severe during attempted transitions to college and university and, even there, there was no insight or help.  

And, in the middle of all of these gradually, then suddenly explosive issues (needing the involvement of utterly useless crisis teams and MH teams who, again, failed to identify autism), there was I, doing my utmost to build upon what I'd already learnt about anxiety, depression, psychosis and highly sensitive people plus using my counselling skills to try to create a calm, empathic and nurturing home.  I can't say that none of this helped, or maybe prevented things from becoming even worse (we're still alive, after all, although sometimes this surprises me, given the enormity of what's happened).  But all the time we needed to hear one word - autism!  And I really wish that websites and other resources focussing on HSP and high anxiety in particular would include information about autism.  To my mind there's too much of an overlap for them to ethically exclude it.  :(    

It is a horrible thought, there needs to be much more awareness of autism and other issues. But in the UK, the government is cutting back on social care, making it harder and harder for the NHS to function properly, pushing us towards the American system of healthcare with paying for insurance etc. So in the UK it's only going to get worse it seems..!

My daughter was lucky, her school is brilliant. They spotted the fact that she was very withdrawn (she's not like that at home!) and had frequent meltdowns. They suggested to me that she could be a high functioning autistic girl, because she is similar to their other high functioning autistic students. They recommended we apply for a diagnosis for her, so we did and she got one. So it's all down to them, we were very lucky.

So she won't have to go through decades of wondering why she's different, why she struggles with social situations etc. like I did. It is such a relief.

Yes, my own childhood was similar.  And, when my own children were quiet and shy, the same lack of knowledge and understanding meant that they slipped under the radar too.  And I still thought I was in a good position to support them because, having read all the self help and HSP stuff plus applied lots of the strategies in my home and worklife, I thought I had lots to share.  I just didn't know how deep the rabbit hole went, to the detriment of us all.    

I wonder how many have had (and probably are still having)  the experience of going through school more or less anonymously.  Then carrying the same pattern over into work.  It sort of makes me shudder. 

See this is where I differ. I do not have special interests nor rigid black and white thinking. I have constantly changing interests, I am somewhat black and white in my thinking but not exclusively. I've no idea about executive functioning differences because I don't know what that means.

Yes, definitely a crossover but autism has other things as well such as special interests, rigid black n white thinking, executive functioning differences etc 

I never thought I colkd have EF difficulties either until I started reading about it and it became more apparent in my assessment discussion and report.

Why do you feel it's your fault that it wasn't identified earlier for you or your family?

You could be right indeed.

I don't think HSP is a condition, Elaine Aron says it's a trait. I think maybe HSP is part of autism, not the other way round. It's hard to say. Scientists/ doctors need to understand the human brain a heck of a lot more before they know.

Oh right, I may have heard of the DSM. There are so many initials everywhere that I get confused.

Well of course, it would have been better for all of us to be identified in childhood. I think I just slipped under the radar. I was a quiet, shy student who never rocked the boat and did anything unusual so I just went through school more or less anonymously.

Ah, you see, I never thought of myself as having EF issues, communication difficulties or any of this.  Plus I regarded my interests as simply interests and not "special".  So the whole concept of being a HSP delayed my realisation that i'm autistic by years.  And this also meant I failed to identify that the rest of my family are autistic too.  Particularly as a parent, I let others down.  No identification equalled no support or awareness and lots of judgment, criticism and blame.  We ended up being pushed into crisis situations before autism was even mentioned.   

Yes, I see what you mean. I ascribe my heightened sensitivity to my autism, it's part of it  not separate from it.