Lived Experience Forum

[justanotherguy]

I've been investigating undiagnosed autism as a possible explanation for how my life has unfolded, I seem to have had several of the indicators early in life. But it is hard when this is on the Victorian Government 'Better Health' website:

"Autistic people often experience difficulties when trying to understand the emotions of other people. Subtle messages that are sent by facial expression, eye contact and body language are often missed."

So, when I see some of these 'subtle' non-verbal messages in people (they really aren't that subtle), I now ask them directly if they are meaning something else, and I get accused of being paranoid or psychotic! So you can't win either way it seems.

[Appleblossom]

Hey @justanotherguy 

I self identify as aspie.  I think you are on to something.  Some people say I have very good social skills and can pick up subtle signs.  I have been thinking about it for a long time.  First book that touched on it that I loved when I was in my 20s was Gordon Vorster ... Textures of Silence.

Then about 30 years I cam across ideas about autism and aspie stuff while dealing with my kids.  It fitted me pretty well in many regards, but a lot of the problems come when we try to squeeze people into boxes or labels.

I self identify easily, maybe too easily, my current pdoc is on a normalising theme with me, which is great of him.

Not gotten a formal diagnosis as it is too expensive and probably not worth it for me.  I have  also socialised with various shrinks here and there, and they tend to minimise it all ... which I find interesting.  What they might say to a client or patient, or to a fellow singer or traveller ... hmmm ... all food for thought.  oh I also taught a pdoc piano once and met her mother, so opportunity for me to do a bit of my diagnosing ... I now have almost enuff anecdotes to mess with the God of stats. Context means a lot ...

Bottom line is I see a lot of spectrums involved in mental health and illness, and they are not just the so called autistic ones.

[hanami]

@justanotherguy when I worked in older person's mental health I saw a woman who was in her 70s. She was with our services for 'mental illness'. BUT she felt that she had undiagnosed autism. Our psychologist 'assessed' her and agreed. BUT other staff members were like, no, it's mental health issues. I am no expert at all but I got on really well with the psychologist and when she talked about it with me, I agree it was autism. This woman was a wonderfully intelligent and articulate person. And I felt great sadness for her that no one would listen to her. 

[wellwellwellnez]

I have undiagnosed adulthood. I keep telling people "I'm a big boy". I even stomp my big boy feet and they still don't seem to understand.

[justanotherguy]

@wellwellwellnez, I find the t-shirts amusing: "Adulting is hard". I think a lot of people just don't really want to grow up, and society caters for immature people quite well.

@Appleblossom, in a moment of clarity, I actually mentioned possible autism to my psychiatrist, and listed the reasons why, to which she replied no, I was wrong, I definitely had a psychotic illness, and would continue on her prescribed treatment path.

Fitting myself into the autism/aspergers spectrum seems to make sense based on life experience, and explains why others seem to have such a problem with me. It's like the more honest and caring I am, the more people attack me. Right now I'm just doing my own thing, staying away from others, and enjoying the quiet time. But according to the 'mental health experts', that makes me some kind of psychopath.

I'm not sure if I want another 'diagnosis', and decades of people misrepresenting me and trying to 'fix' me all over again.

[Appleblossom]

@hanami @wellwellwellnez @justanotherguy 

I am wondering if I need to withdraw from support workers, as I do think the training is inadequate for them and they really do not seem to understand the complexity of the issues.

Had a support wkr today and I was a good girl and stood on the spot she wanted, but inside I am thinking WTF.  Talk about infantilising me and controlling me.  I am going to reduce to once per month and see how it unfolds.  I do not want to get into the situation of that older person @hanami mentioned.  I have worked so hard to be helpful and compliant with my gp and she has gone MH stigma on me.  My physio and counsellor seem alright.  The support worker means well, but we end up speaking pidgin english and I indulge her and probably enrich her time emotionally in many ways. I took her to see a gorgeous multicultural free art exhibition today in the midst of our 2 hours. She fibbed a couple of times ago. Today I told her to ease up on the bossing about road safety and also used humour. quipping about us being naughty as the light only says for men to cross not girls or women ... whateva ....  I really do not need to be told where to stand when I am negotiating roads and footpaths.   I told her today she had ticked a box for helping me with civic participation.  Its hard to really know what her English comprehension is.  I always acknowledge, friends, family, students, neighbours, workers ... etc ... Who is helping who??

I also asked my support co-ordinator to help towards recovery, and she is really lagging in getting back to me on helping me with a cv etc..  Maybe they just want me on the client list to make money off me, more than actually do the right thing by me .... thinking thinking ...???  Help actually needs to be help.

I love your sense of humour @wellwellwellnez 

[justanotherguy]

@Appleblossom, as I sit here and read your comment, and others on other posts, I feel so exhausted from a lifetime of not really understanding myself. I definitely had 'autistic' traits as a young child but it was dismissed as just difficult behaviour and I never questioned it. This attitude from loved ones has persisted ever since, and I have always tried hard to put in a big effort to be relevant, but I feel so wasted now. And the medication really turned me into a robot, while the real me was dying inside. I am starting to feel some inner peace that I've never felt before and it's wonderful.

And on the subject of support workers, I suppose many people get to the point they know more about their own 'illness' than anybody else ever will.

[Appleblossom]

Sorry you had those feeling re family and medication. @justanotherguy  Not sure where you are with it all now.  Not being understood by our nearest, but maybe not dearest is really hard.  Another saying is that a prophet is not recognised in his own country.  

I am def in the camp of less is more re meds.  Learned a new word this week ... deprescribing

https://www.racgp.org.au/clinical-resources/clinical-guidelines/key-racgp-guidelines/view-all-racgp-... Have not read this yet, but will look at it later ... saw a few deprescribing practices with professionals are online ...

God only knows what illnesses I have ... eye roll ... at me.

[Appleblossom]

@justanotherguy another thought on our discussion ... please take it in good faith ...your tensions seem to lie between you and your family of origin ... whereas for me ... it was both parents who were given the serious labels,  and also 2 siblings had early big 'mental hygiene' involvement (wots in a word hey? fashions change), and then it became my job to sort it all out ... When I tried to get a straight answer from their various pdocs over time, these are some of the conclusions I have arrived at.

cheers

Just another apple eating gal ...

was supposed to keep the doctor away ... loll

[justanotherguy]

@Appleblossom, I really did have several genuine autistic traits (and still do), I'm not sure how much family stress creates it? The standard line years ago for all kinds of strange behaviour in kids was "Oh, they'll grow out of it", and they usually did. But probably learned to adapt their behaviour to fit in? I can see now that I did, and when I got to my mid 20s, the wheels started to fall off and I didn't know why. Nothing I did seemed to work and nothing much made sense like it had before.