Late diagnosis and childhood memories

My mum often told me that when I was young I would sit on the floor and arrange all my toys in a semi circle around me. I still do this today, but the toys have been replaced by a laptop, cup of coffee, cigarettes, phone and whatever else I happen to need nearby.

When I was a child I would hum the theme tune to my favourite TV shows while banging my head against my pillow to get to sleep, it took years of practice to unlearn that habit. These days I just think myself to sleep.

I was at the park with my mum once, and mistook a dead, stiff, leaf that had fallen on the back of my hand as some kind of insect that was attacking me. The points of the leaf that were touching my hand felt painful. Screamed and ran to my mum. She didn't understand.

I did the arranging stuff too.  And that's never changed.  As much as I adore my son, I was completely useless at the "Mummy, can you play with me?" business.  Given a pile of play people knights and kit, all I could do was sort them out, so all the right knights had all the right kit and were nicely lined up.  To quote my son:  "Mummy, you're no fun".  Ahhh well...

I did the arranging stuff too.  And that's never changed.  As much as I adore my son, I was completely useless at the "Mummy, can you play with me?" business.  Given a pile of play people knights and kit, all I could do was sort them out, so all the right knights had all the right kit and were nicely lined up.  To quote my son:  "Mummy, you're no fun".  Ahhh well...

It seems that way, thankfully my support worker suggested I make an appointment to see her manager who has much more experience dealing with mental health issues. When I saw the manager she had some understanding of my issues, and agreed with me that it would be a good idea for me to ask my GP for a referral to an occupational therapist, she also said she might assign a different support worker to me.

I wrote down pretty much my entire life story and examples of what's going on in my head to show to both my support worker and MindsMatter (when I'm able to self refer to them again) in hopes that I might be able to communicate all this better in writing than I can with speech. Maybe this time they'll all get it. Hopefully.

I think someone neglected to train your support worker, and sadly it sounds like you'll have to train her.

You're where I was before I lost my mum. Her arthritis got worse and worse over the years before she died and I had to take up housework, but due to my major procrastination problem I wasn't able to do a good job of it. Wish I could have done better for her during that time of her life after everything she did for me.

As for people not listening, that doesn't surprise me, the support worker I have now outright told me she doesn't get why I can't do things without being prompted, because she's spent her career caring mostly for physically disabled people. Autism seems to be the kind of thing you can only understand if you have some amount of lived experience with it.

I'm sorry you've lost her now.  But I get that.  When I finally got my diagnosis, my mother cried.  She said she always knew there was something, that she kept trying to tell the school, but no one would listen to her.

She's frail now and I guess the tables have turned a bit.  She needs me to do what she can't now I guess.

I can dig that, my relationship with my mum was similar, she loved me but didn't understand me or know how to help me. Our relationship was a mixture of resentment and love, so we'd often end up having an argument due to the resentment building up over time then make up with hugs.

The last ten years of her life I thought she'd given up trying to help me and just decided to do whatever made me happy, but a year before she died of cancer I found a leaflet titled 'How to take care of your autistic child' so even in her late sixties she was still trying.

ahh, I'm sorry your mum got angry.

My relationship with my mother was just very distant.  I wouldn't tolerate her trying to hug or kiss me and we really didn't get each other at all.  I think she's got a few traits and we weren't able to read each other.  She has often said I was independent from the get go, like that was a flaw or something.  It took me years to figure out she was looking for some closeness I wasn't giving her.  I think she needed me to need her, and well...I just didn't.

I never thought she liked me very much, but she was very dutiful and proud of my achievements.  It took me into middle age to realise that she did actually like me but couldn't show it in any way I could understand.  She did appreciate the tidy room, though.

I hope that behaviour helped your mum love you. I remember my mum would often gather up all my toys and threaten to throw them all away because I'd unintentionally done or said or not done something that made her angry.

Yeah!  My mum says I was forever arranging not just my toys but my whole bed room.  Bit of a plus for her as she never had to nag for me to tidy it or even go clean it, 'cos I automatically took that job on.

Yeah it's really annoying, these days I usually end up arranging stuff right before I leave the house and end up being late because of it. Right before I leave the house I'll think 'Ooh I'll just tidy the coffee table', 40 mins later I've tidied the coffee table, put the rubbish in the wheelie bin and a variety of other small tasks. Its amusing but causes me no end of problems with time management.