I'm Autistic, ask me anything

[Tobythecat]

Anything at all

ABA sounds horrific. Before I knew anything about autism, when I was in my twenties, (decades ago) I remember a woman I worked with saying how she 'helped' her sister with her autistic daughter by holding the screaming daughter down as they brushed her skin with a hairbrush to desensitise her. It sounded like abuse.

DS just has a lot of down time. A lot of screen time, zoning out with the cat time and playing guitar alone time. He just needs to decompress. We took him to a music festival before he was diagnosed (he likes music) and he spent most of the day hiding under an emergency blanket. We didn't really know why, but he said he was fine as long as he was allowed to stay under the blanket. looking back, I wonder if it was sensory overload.

This thread is SO helpful and interesting. Thank you battleax and staffie and others who are all so ready to answer questions and give advice.

I have one more question. DS never tantrummed. He screamed his head off for the first 18 months of his life but that was due to pain (ASD related stomach disorders) He's never had autistic meltdowns. Intsead he goes into a fugue state. Medics told me this is an autistic trait and survival mechanism instead of meltdowns, but rarer than meltdowns. Does anyone here have fugue states. If so, please would you explain what sort of thing triggers them, how you feel inside them and how do you want to be treated while you're in one?

Sorry - my question wasn't very clear. It was: Do any of the autistic posters on here have fugue states? if so, how do they feel, what triggers them and how do you want to be treated when in one?

Are you meaning autistic shutdown or a dissociative state when you say ‘fugue’?

I've never heard of fugue states before. Reading up on them is a bit chilling. I had a very odd episode as a teenager a bit like that, but apparently it's super-rare, so it's unlikely that's what it was. I'm going to do some more googling though!

I do have a terrible memory and don't remember much about my life generally, and sometimes get lost in imagination, or can't recognise myself in a mirror. The latter things can be quite scary. I've always assumed disassociation was just something that happened to everyone occasionally. Maybe not.

My guess would be being calm and logical and patient would help, but it must be very hard to see someone "vanishing" and not knowing who they are right in front of you.

Maranello I wouldn't have been able to come at a normal uni due to me sensory issues - plus being around people all day would just cause me a lot of sensory overload and distress. The bright lights, the noise, crowds etc and the dissociation would be too much.

Minapaws I have experienced chronic dissociation since 11. I believe it was caused by my transition to secondary school and all the different classes/teachers, the noise, the more complex social stuff and the noise/crowds. I found it very overwhelming. I still get the dissociation and i'm unable to control it - it's a terrifying feeling of my surroundings feeling unfamiliar and distorted.

Sorry I missed a lot of questions earlier in the thread - but for the person who asked if I could take the autism away would I? Absolutely without a doubt. It causes me a lot of suffering and distress and i'd do anything to not be autistic. I have never had a relationship in my life (I'm 27) and I doubt I ever will. I've never had a job either and will likely never experience the joys and milestones (learning to drive, getting married/buying a house/having a family) that so many take for granted.

The most difficult thing for me is when I bump into an old school classmate and they are with their long term partner/husband and child. I go home and just cry and cry because life has been so cruel to me and I don't know what i've done to deserve this.

That sounds really shit Toby. Wish I had a magic wand to make life easier on you, I really do

maranello I managed uni by renting a tiny house off campus and rationing social events. I have always studied non-lab subjects so eight hours over a week was doable. I just used to swoop in, attend my hour or two and leave again on a bad day. More social on a good day. I also just used to take the hit on library fines rather than try to study in the library a lot. Probably lots of small things too. But big green campuses always appeal to me. I wasn’t diagnosed then, although I had a shrewd idea what was up by that point.

DS has had the adjustments of having the same room for three years, a room in a (comparatively) quiet part of college, special library privileges, special kitchen arrangements and lots of little (arranged and unofficial) things but he still found aspects very difficult especially in the first year. He got most of this as a result of having a diagnosis.He also has a special contact person.

There’s also a society for aspies and shy people at his uni which was unheard of in my day.

DD feels uni isn’t a viable option for her at all. She’s very ambitious and very talented and pursuing a non uni route very happily.

(If you’re planning for uni for your child, go and ask on the student room about experiences at different institutions.)

Aww Toby, sorry you’re having such a shit time of it

Sorry for your troubles, Toby .

Can I please ask any parents of Autistic children if their child was non-verbal and did begin to talk?

My son is 3.5 and doesn't talk, although in the last 6 months he has begun doing some babbling, but no words.

He begins speech therapy in the next few months. How likely is he to learn speech?

One of mine was until slightly younger than that. Then boom, speech exploded. I gather that can happen at various ages.

My aspergers ds had good speech early on, my PDA ds was late to talk, but soon caught up.

I try very hard to talk normally, but I get words and phrases muddled up, use the wrong words, get my sentences back to front and sometimes just talk rubbish. It’s very embarrassing esp when I need to mask perfectly.

Thanks for the replies.

GorgeousJaws my son is still pretty much non-verbal at 4.5 years. Most of his speech is demands/needs based ("drink", "banana", "pasta" etc) and a lot of echolalia used appropriately. His SALT mightn't see his progress as amazing as I do, but he can communicate his needs now and he has less meltdowns because of it.

He may never be one for spontaneous conversational speech, but his NT Dad isn't either, and hearing his lovely raspy voice demand things is music to my ears so I don't care.

Also getting my son interested in music has helped a lot. He will sing big chunks of song lyrics when he is happy and it gives him such a release.

Also Usbourne my first words books have been invaluable for my son. He loves them and gets completely absorbed in them.

Thank you Solitude, he does like music.

Hi @Tobythecat thanks for coming back here.

What you say about disassociative states sounds right. DS had them a lot at primary (unhappy there - not a supportive school) and a lot in his first two years at secondary which is a super-supportive school. I don't think he's had one for years, except in exams. But he only had one or two in GCSEs. Due to the school's support he didn't freak out in the actual exams as much as he thought he would when he did mocks (quiet, small room separate from the big hall.)

I'm sorry you are not happily autistic, @Tobythe cat. That must make it even harder. But please don't think there's no hope of you being happily married or partnered or having children. DH had very few friends when we met but we clicked instantly and have been together ever since (25+ years) He was 34 when we met.

I have other autistic friends who are happily married, and my closest friend is autistic. She's single but she lives a wonderful life and has very devoted friends.

All the autistic poster on here have been so helpful.Is there anything any of us NT posters can do to help or support you, Toby?

@mysocksmakemeitchy not sure which I mean (autistic shutdown or dissociative state) The ASD team used the phrase fugue state, so all I know is that fugue state, as far as DS is concerned, is a state where his eyes go glassy and very still and staring and he seems to have zoned out of the world. He doesn't hear if you speak to him, doesn;t react to the world around. If touch him gently on the shoulder and say his name a few times then he comes back. Almost like a trance state.

When he first started secondary he;d fugue for about one hour in the same chair, with the cat on his lap, every single day for about two years. he still returns to that chair and when he got stressed about GCSEs I'd find him not in fugue state but with the cat in his safe space. I just wondered what it was like. Toby from what you say it sounds like it's a shut down in response to sensory overload - is that right?

My son shuts down, heart rate slows down aswell, he does this when it all gets too much for him.

I only know the term ‘fugue’ from psychiatry where people go off wandering and don’t know where they are or even who they are.

The term ‘autistic shutdown’ means that the autistic person completely withdraws into themselves and shuts off from the outside world due to stress or sensory overload.

Thank you for all your kind messages

I have aspergers, diagnosed last year. Do you feel that it is the same thing as autism or a separate 'condition?'

For others on here on the spectrum, are any of you the only one in your family? I am and this seems to be weird. I always read about adults who have DCs with it or they suspect other family members, but no one else in my family appears to have it.

Do you feel you can control meltdowns? Or have some sort of strategy to manage them? I always thought I don't really have them but I think there have been occasions where I just get sooooo angry but I have to walk away (or storm out in a towering temper is more accurate), but I've always thought this just my inability to deal with anger in a rational way. I think I just retreat more than meltdown really.

Medication controls my meltdowns, but I sometimes feel that others benefit from the medication more than me because it means they’re not getting offended by me. My personality is duller due to being on it, but it makes me more socially acceptable.

My dcs are high functioning autistics and dh is very introverted with social anxiety, so we all get along very well.

@Tobythecat

Firstly, thank-you for starting this thread, it's enlightening and very informative.

Please don't compare yourself to NT people and judge yourself by their standards. You are not wrong or a failure because your life is different. If they had autism, their lives would be different too. NT people are very good at presenting an image of themselves that shows how great their lives are, but in reality very few NT people are happy with their lives or themselves.
Your old school friends could think 'Oh Toby's so lucky, she's free to do whatever she wants. I've got to dash around every hour of the day, scrimping to pay the mortgage and all the bills, trying to find childcare, all of my wages are taken up paying bills, I'm worn out and unhappy, my partner's sick of me being miserable, he doesn't help at all around the house, all that is my job as well. I'm so worn out he thinks I've lost interest in him and I think he's going to have an affair'
But they'll put on the false facade when they see you and tell you how great their life is.

I've read a lot of your posts on MN and you have a real gift for writing and expressing yourself well. You're objective and very organised, your posts are very easy to follow and you are very self-aware. I don't know if you blog about autism, but it may be something you'd like to consider.

Sorry, a bit late to this
Is it useful or helpful to know how to interpret this kind of NT duplicity

In my opinion, it should be an essential part of every autistic person's education.

I found the best way to show this was by watching pre-recorded favourite TV programmes with dd. She was into soaps, so Coronation Street always has a very simple to follow plot and characters that are pretty much transparent.

We'd settle on the sofa with no other distractions and every few minutes, we'd pause it and talk about what the characters had actually said (subtitles help with this) what their expressions were, did that make the words true or not true, what their actions were, how it made other characters feel etc.

Mina I'd also say shutdown, caused by overload,usually sensory and sometimes emotional as well.

in reality very few NT people are happy with their lives or themselves

Do you have any evidence at all to back up this rather offensive sweeping generalisation?