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Author Topic: Autism  (Read 1606 times)

ElkWarning

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Autism
« on: December 19, 2023, 09:16:46 PM »

So, after a 3 hour assessment in an NHS neurodevelopmental clinic today, I was 'officially' diagnosed as autistic - with OCD.

It's not a huge shock. My GP referred me ...

Turns out that most of my madness and badness is linked to autism, which is pretty sad, after years of beating myself up for being ridiculously unable to communicate in a way that works for anyone (including myself).

Reason for posting here, we did talk about the menopause and how autistic women struggle horribly. Hormones play havoc with an already significantly compromised sense of self, made a million times worse for the high functioning - who've mainly managed to fly under the radar by previously cyclically  burning themselves out. This is further compromised by sensitivities to HRT and communication / social difficulties.

I mean, I'm glad it was picked up, and I was supported and encouraged to go through the process. But I'm also sad that I struggled for so long.

I note the deafening silence in the current discourse and prescribing regime around autism, which requires something more than 'this hormone does that' (for neurotypicals).
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ElkWarning

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Re: Autism
« Reply #1 on: December 20, 2023, 07:39:21 AM »

That's very kind of you, thank you.  As you suspected, I'm not ready at the moment, which is kind of odd considering I worked in neuroscience research focused on autism for seven years.

But you're right, there are positives.  I have a background in law (apparently favourite hiding place for autistic people) and now I'm a history teacher.  Life has been interesting as I've put my characters on and taken them off like coats.  As it goes, I appear to have some strengths around teaching kids (11-19) classed as SEN (autism and ADHD) and SEMH (as you probably know, trauma looks a lot like / has the same impacts as neurodivergence).  I'm lucky that my school leadership is investing in training around this for me with a view to specialising - I work in mainstream in a deprived area.  I suppose, given that context, I just feel a bit triggered by the diagnosis, even though I knew it was coming.

Many thanks
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SarahT

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Re: Autism
« Reply #2 on: December 20, 2023, 07:42:08 AM »

Good morning ElkWarning,

Thank you for posting. I will say straight away so have little knowledge of understanding of autism. I can only have a slender grasp of your myriad of feelings after a formal diagnosis. I do find having an actual diagnosis helps me as I can research properly now to obtain help and how I may be able to help myself, or manage symptoms. I almost feel justified in a way, or that a piece items has slipped into its proper place. All these things make up part of the whole as to who we are.

Postmeno3 replied beautifully knowledgeable and with helpful links as to,  and if you want them at any point. I wish you well,  x
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Tinkerbell

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Re: Autism
« Reply #3 on: December 20, 2023, 02:50:08 PM »

I have a friend who received an autism diagnois in her early forties. My husband was a late diagnosis too and my daughter was diagnosed with ASD last year at age of 18. I wasn't aware of the strugles with meno and ASD, hopefully by the time my daughter gets to that age understanding will be better.
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Jules

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Re: Autism
« Reply #4 on: December 20, 2023, 05:38:30 PM »

My work was also in SEN, children and adults, and I studied the AS at university.  I wonder if late diagnosis is partly down to increased awareness in recent times. I know 3 people now over 40 who never had a diagnosis but I think likely have Aspergers, one glaringly. I also know a primary school teacher who asked me what Aspergers is. I was astonished. I'd not given any thought about menopause in people on the autistic spectrum or even other people with learning or physical challenges.  I'm barely grasping it for myself
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ElkWarning

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Re: Autism
« Reply #5 on: December 27, 2023, 07:05:36 PM »

Hiya

Postmeno, I've actually had a bit of a look at the Attwood site, really interesting, some useful resources there.  It's still weird to read about yourself as if you're not yourself - if you get what I mean.  Slightly dissociative.

Sarah, I get what you mean about the jigsaw pieces.  But it's a shock, because it's as if I couldn't do the puzzle before being as I had the wrong picture on the box.

And while there is increased awareness, and a lot of late diagnoses, the painful part is that there are so many misdiagnoses leading up to this.  I 'got lucky' when my eldest sister (20 years older than me) contacted me to say she thought I should look into it as she'd seen a TV programme / done some research and recognised me as a child - I mostly lived with her rather than my parents.  A few other people, including my husband and therapist (two separate individuals), also supported me to go forwards.

I think what I find difficult is having had such a bugger of a time with my mental health for my whole life, right from when I first went to school, and now realising that quite a bit of this was because I was being forced to do exactly the opposite of what I needed to do.  For example, sure, I'm avoidant, and actually pretty introverted most of the time - operating with limited filters is soooooooooo exhausting, constantly having to learn 'scripts' for interaction, getting it wrong, messing stuff up, but trying and trying and trying to be 'normal' ... Yeah, this has been catastrophic. 

All I ever wanted was to be left alone, but instead I had to be socialised, largely against my will, and I just couldn't cope.  On the other hand, sit me down with something like Hegel's 'Reason in History' (early 19th century German philosophy) and I'll be reading that book to try and make sense of it for months and months and months (it's a tiny book), until I have a stratospheric knowledge about zeitgeist.  I internalised people telling me I was a weirdo for a long time, and it wasn't a good internalisation.

Anyway, yeah, the menopause (and PMDD for that matter) thing is odd.  Studies have found that some people with autism have limited 'interoception'.  It means we can't actually listen to our own bodies.  We don't know what they feel like.  It's as if they're not there.  This is very confusing when you're experiencing an impact.  That sense of being overwhelmed is magnified (by hormonal fluctuations) to such an extent that it becomes completely (psychotically) unbearable.  And yet I didn't know why.  A little bit (or a lack) of oestrogen here and progesterone there was amplifying my autistic tendencies until they made my head explode.  I do kind of wonder whether some women who struggle so hard in peri / menopause are on the spectrum.  Some useful information here - https://www.autism.org.uk/advice-and-guidance/topics/physical-health/menopause

« Last Edit: December 27, 2023, 07:07:15 PM by ElkWarning »
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SarahT

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Re: Autism
« Reply #6 on: December 27, 2023, 08:52:33 PM »

Elkwarning,
I find your post so enlightening and hope it may bring a lot of help for other women who read it or can pass it on to someone who may benefit. But I realise your post does come with a cost to you. I see of the struggles you have had in trying to be forced into a world that does not fit you in many respects. You describe having '.  to learn scripts' to interact with others, when it just doesn't make sense to you.  You paint a very graphic portrait and I hope this does not sound patronising for me to say I really feel for you,   having lived a life that it seems was almost alien to you. That saddens me.
Thankfully you have people close to you who have always been supportive of you.

 You speak of a therapist, I trust You will be able to work with them as I imagine this has opened up a whole new thought process for you. None of us can ever walk in someone else's shoes, and your younger life must have been incredibly bewildering for you. It has given me a small but important insight into autism. A late diagnosis, but I hope the support you already have can now be added to. I wish you well. X
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laszla

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Re: Autism
« Reply #7 on: December 27, 2023, 11:46:27 PM »

This is a generous and helpful thread Elk, the few people I know who have had a diagnosis speak of relief but also grief and anger for all the years they were misunderstood and mistreated.

I desperately want an assessment but have no idea how to go about getting one and I'd be very reluctant/scared to discuss with the gp, I wonder if anyone knows of other options - am London based.
You also mention that there are overlaps between AS and trauma, I'd be grateful if anyone had any pointers on good sources to distinguish between the two.

Thanks also for the useful resources postmeno.
Regarding limited interoception, practices such as somatic experiencing (Peter Levine) can be be helpful
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ElkWarning

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Re: Autism
« Reply #8 on: December 28, 2023, 10:57:43 AM »

Yeah, the scripting thing is almost funny.  For example, someone (charity person) came to our door while we were eating dinner and this sort of thing generally annoys me.  I watched how my husband dealt with it, what he said, his tone and body language.  And I was like 'Oh, that's how you politely deal with people you don't want to talk to'.  So next time I had to do that, I just copied what I'd seen, same mannerisms, words, etc.  I don't know whether this is true for all autistic people, but it's like the unconscious mimicry bit is broken.  Another stupid example, remember how David Cameron would finish interviews and just walk away.  I've always done that.  Talking over, time to move.  No goodbye or closure to the conversation.  It comes across as incredibly rude - apparently.  I used to try and fix it by going back and saying 'Oh sorry, have you still got something to add?' and then people assumed I was being sarcastic.  This is why I prefer dogs and cats.

It's funny what you say about socialisation and conflict.  As I've mentioned elsewhere, I'm a teacher (11-19), in a deprived area, with a high SEN ratio and lots of trauma.  Autism and my own life experience is a strength in this respect.  For reasons I can't quite put my finger on, I'm able to teach kids in my classes that colleagues can't even have in their room - hence additional responsibility in this area.

Which brings me on to how to distinguish between autism and trauma.  I mean, it's a bit of a vicious circle I suppose.  My take on it is that it's all relational, or has an impact on how relations are formed and managed, including with the self.  I'd say that the main difference is around 'diagnostic criteria'.  Autism technically falls under the auspices of psychiatry (doctors), whereas trauma is more psychology (therapists).  With the former, you're a patient, with the latter, you're a client / therapee / analisand.  Further, autism is defined by the DSM (The Diagnostic and Statistical Manual of Mental Disorders), as is PTSD, but trauma is a bit amorphous (e.g. Is it short-term or long-term?  Is it a 'disorder' in the traditional / pathological sense, or is it a reaction to distress?). 

For me, and I'd stress that this is for me, in some ways it (is it autism or trauma?) doesn't matter.  I don't care.  I just need access to a form of therapy that will help me manage my life.  And that was my key and why I chased the diagnosis.  What I found was that when I went to the GP reporting difficulties, I'd always be asked to fill in a GAD7 and PHQ9 (the former tests for anxiety, the latter for depression).  These were the only diagnostic tools used.  And every time results would show severe anxiety and clinical depression.  But if you're only testing for two things, then you're only going to get the results for those two things.  So I'd have short term treatments, that would work for a while, and then I'd be back at square 1.  In other words, I wasn't getting any form of deeper resolution and I constantly felt as if I was 'failing' at getting better.  Obviously, this put me in a really bad place.  For years.  And it's why I'm not a fan of non-specific CBT.

Re: Extremes at puberty, the biggest one was that I was anorexic (my food preferences were roundly ignored so I just stopped eating).  Also a hardcore (androgenous) punk.  My shaved, pierced and filthy demeanour were usually enough to drive even the most persistent socialisers away.  And then, yes, you know, I found other ways to anaesthetise myself.  I do notice it with some of the kids, especially the full face of make-up, fake lashes, long talons crew.  And I had one the other day (a boy) constantly shouting out highly sexualised things about a cat - I sort of diverted him talking about the cultural history of domesticated cats and where the nearest burial site for one could be found.  Again, another advantage of autism, I suppose, having that Teflon coating (when I'm not exhausted, when tired there's no barrier at all). 

But I did get lucky.  Met my husband when I was about 21.  He knew (and still knows) how to handle me.  Was a psych nurse, became a philosopher.  At roughly the same time I began to develop my 'special interest' in law.  When something's all consuming, it's all consuming.  I settled down almost overnight.

Re: HRT and autism, I think maybe there's just another dimension there.  I'm not saying the challenges are more challenging, more that maybe they're different.  It's confusing, and hard to find the feelings to attach the words to so that I can explain stuff.  Curiously (or maybe not) I'm trying to write a book about this, because I gave up on trying to figure it out and instead went off and learned how to ride motorbikes.  This is where I found my menopause peace.  When there's just you, the machine and the road, the world becomes very quiet and almost manageable - 100% concentration or you die.  I find it's a very physical way of connecting to my body by 'fusing' it with an engine.  Like, me and my bike are one.  I know how she works.  I can take her wheels off, fix the sprockets, grease her chain, etc.  We have a relationship of trust.  People are strange.  Mechanical engineering is not.

Meh, sorry, that all came out in a bit of a spew. 

Laszla - I think you have to go through the GP for an autism assessment, because it's doctors, one has to refer you to another.  It is a big step, however, bizarrely (given what I've said above) CBT (that you can self-refer to in most regions) could help you with this, as I think it's really useful when someone has to make a defined decision.

100% what Postmeno says about the difference.
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laszla

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Re: Autism
« Reply #9 on: December 30, 2023, 03:57:03 PM »

Hi Laszla.
If you can try to see the gp as just a stepping stone towards diagnostic services, it may help? Can you try to relax into using them as the mere go-between? Might it be worth writing to the practice manager to explain your anxiety and asking for a recommendation of a sympathetic and knowledgeable gp who will simply acknowledge your own understandings and refer you on?
I believe it is possible to self-refer and I cannot vouch for that process, sorry, not enough knowledge of it.
The NAS website has lots of pre-referral and referral information and I imagine it might even be possible to contact them for advice about whether it's possible to bypass the gp or whether they can advise on the nearest diagnostic services you could approach.
I don't know if you are involved with any mental health services as they can refer.
As far as differentiating between autism and trauma, for sure individuals can develop "autistic-like" behaviours where extreme trauma has been consistently and relentlessly experienced, but the difference would be that these are learned behaviours as in survival strategies and may not follow the trajectory or pattern of clearly defined behaviours in autism which are there from birth? Simon Baron-Cohen might have some material on that. Learned behaviours can tend to adjust and adapt to changing contexts, switching to match those "conditions". Autism would tend to keep individuals bound by their "constraints" and "traits", unable to attune to a different context needing a different response?
Hope at least something here helps with your perfectly understandable anxiety and hesitation and you can move towards your longed-for goal when ready.

Thanks for this postmeno,
The problem for me with going via the gp is that one of the doctors in the practice put the phone down on me when I said I felt suicidal; on complaining to the practice manager, the latter responded that she was "heartened" by the doctor's handling of the situation.
After that I would not dream of speaking to any of them about MH probs - and my specific gp, who was lovely, died quite young and the practice did not even inform her patients, I found out online.

I only stay at this practice because I'm a carer for my 87 year old mother and I have got a good system going for managing them to get good backup and referrals for her - I have no available family members to assist with caring stuff.

I will look into self-referral as you suggest.
I see what you mean about the differences/non-differences between autism or ptsd - sometimes I think it might be useful to get an official diagnosis of some kind.
They are currently doing a study at King's College on psilocybin for autism and the external advisor is Baron Cohen, am curious to see how that will turn out - psychedelics have had promising results on plenty of other conditions such as ptsd, eating disorders, addictions, treatment resistent depression etc.
Which reminds me that in his book How to Change your Mind, Michael Pollan suggests that the official diagnostic differences between different MH conditions might be quite artificial/non useful, as if there might be a unifying theory of mental disturbance, given that these psychedelics appear to treat such a wide range of them quite successfully.
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laszla

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Re: Autism
« Reply #10 on: December 30, 2023, 04:02:22 PM »

Re: HRT and autism, I think maybe there's just another dimension there.  I'm not saying the challenges are more challenging, more that maybe they're different.  It's confusing, and hard to find the feelings to attach the words to so that I can explain stuff.  Curiously (or maybe not) I'm trying to write a book about this, because I gave up on trying to figure it out and instead went off and learned how to ride motorbikes.  This is where I found my menopause peace.  When there's just you, the machine and the road, the world becomes very quiet and almost manageable - 100% concentration or you die.  I find it's a very physical way of connecting to my body by 'fusing' it with an engine.  Like, me and my bike are one.  I know how she works.  I can take her wheels off, fix the sprockets, grease her chain, etc.  We have a relationship of trust.  People are strange.  Mechanical engineering is not.

Meh, sorry, that all came out in a bit of a spew. 

Laszla - I think you have to go through the GP for an autism assessment, because it's doctors, one has to refer you to another.  It is a big step, however, bizarrely (given what I've said above) CBT (that you can self-refer to in most regions) could help you with this, as I think it's really useful when someone has to make a defined decision.

100% what Postmeno says about the difference.

I know exactly what you mean about cats and dogs - I find my relationships with them easy and nourishing.
Re CBT, although it does not appeal to me that much, I had been considering trying it just to get out of current paralysis, fear of doing anything, taking any action, which I suppose could be treated as a phobia, so I will look into self referrals.
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ElkWarning

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Re: Autism
« Reply #11 on: January 02, 2024, 09:02:48 PM »

Strangely, I know Baron-Cohen. His sister had (she died) the same rare neurological condition as my son. We have 'family weekends'. He's a nice bloke ...

And also during my time working in clinical neuroscience, he was one of my boss' colleagues.

Re: psilocybin (and other 'novel' treatments), it's an interesting field. Many years ago (like in the 1980s) I went to an exhibition at a Holocaust museum in Israel that looked at how LSD was used to successfully treat Holocaust survivors. There's all sorts of stuff around ketamine for depression. Not to mention medical cannabis. Anyway, yeah it is fascinating how 'trips' can rewire the brain. In my sedate old age, I limit myself to cold water swimming - somehow radically dropping your ambient temperature really impacts on your sense of wellbeing.

And I'm sorry that was your experience with your GP. One way round, for autism assessment purposes, might be to simply ask for a referral. If they question this, day you're happy to complete the initial assessment questionnaire. They can't refuse to send you that.
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