To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

to you all
dgs has ADHD and is transformed with meds xx

My other dg has Nerofibromotosis from me and ds.

Had to look misophonia up.Must make life hard 🙁

I think it’s wise to just bear in mind that whilst the dismissal of parents of ASD children is dangerous and unhelpful, those adults who come on and tell us of their experiences as a person with ASD have ASD and thus probably have a tendency towards black and white thinking of situations.

Brennan I don’t think you’ve displayed this at all and you certainly aren’t the subject of this thought of mine!

I work with parents of children w autism, many of whom really struggle mentally and logistically with their children as they have to either shout so loud for the smallest thing from the LA, or have to cope with aggression from their child, or crippling anxiety. It has opened my eyes massively to what parents of autistic kids have to deal with, and the massive spectrum of ASD. I know I’d find it hard to deal with (and I have dealt with my own DCs’ MH issues which thankfully are stable atm).

Do you think a lot of knowledge makes things easier? I have just been diagnosed with brain atrophy and have worked in the field for 25 years. I really wish I didn't know what I know

@MelanieSmooter thanks... I do try to see it from all sides

I generally try to give perspectives as I got no help as a child - nobody knew I was autistic and I don't want anyone to feel as misunderstood as I did (although I know not every autistic thinks the way I do).

But I do find it so hard with that section of the NT community who don't want to help, they want to force us round pegs into square holes. Generally it's not massive change that would make the difference either. But then when autistics struggle they are blamed by that section of NT society for their reaction.

For the many who have children with sleep pattern problems. My son was up 7/8 times a nights for years. I was stressed, exhausted and ready to throw myself out the window. His CAMHS psych prescribed Circadin 2mg and we started to have much better sleep patterns. He’s used it, on and off, over the years and I’m about to ask for a prescription again, as his sleep is dreadful (17 now). It might just help to kick start a sleep patter for him. Just a thought.

Suki does that help him stay asleep, or just help him fall asleep in the first place? My 6 year old falls asleep easily but still wakes in the night. I thought the only medication available was melatonin, which wouldn't help him specifically.

Circadan is melatonin. I have used it in the middle of the night when he was starting a to enter an up from 1am routine (just to reset).

Now he gets given proper sleeping tablets - but that’s nothing to do with me.

Suki my DS is on 6mg a night atm, he use to be on 2-4 a night and it was great, asleep 40-60 mins after taking it, sleeping right through. Since his aniexty has shot up he often refuses it and when he does take it doesn't work, so they upped him to 6 and that worked for a little while but this week has been off the scales, he has taken it every night and it hasn't done a thing.

Ah ok. Thanks. He does go back to sleep, he doesn't usually disturb anyone, just looks at comics, ours a small problem, he just sometimes asks me when he'll be able to "sleep the whole night" and I have no idea.

A 2mg tab got him to sleep and he just slept through. By through, I mean from say 11 pm to 6 or 7 am. It was bliss. Now, we’re back to anxiety related sleeplessness but, I think that if he got to sleep and formed a pattern (instead of still being up at 2am worrying about his usual worries) he’d at least get SOME rest again. I was up at 1 and 2.30 and just after 4 last night. We both look like hell this morning but, he can relax during the day whereas “life” goes on for me!

The Circadin is slow release melatonin. So, I was told, it has a prolonged effect rather than just knocking him out.

English that’s not good . DS is so thin that to be honest, I think a half tab would floor him. I love to check on him in the night and he’s fast asleep. It is the only time he truly looks “at rest”. Within moments of waking and for the rest of the day, he is then a very troubled young man.

I think some people genuinely see it as a 'difference' and that includes many people who have ASD. But that doesn't mean that for a lot of people, it's a disability that is really well...disabling.

Same as ADHD which is frequently 'advertised' by high-profile with the condition as being an addition to their lives rather than a difficulty.

Will I Am in the press today saying 'it's a gift'. Might be to you Will, but to many it's a disability which dramatically increases their risk of unemployment, mental illness, contact with the criminal justice system, suicide and can reduce their life expectancy by up to 25 years but yay! You're so creative and successful and can think of 100 things at once!

I also agree with many other posters - every person with autism is different and most generalizations are unhelpful - whether they come from from a ‘NT’ or ‘ASD’ person.

I would challenge this further, there isn’t a clear ‘them’ and ‘us’ at all so no one distinctive group can speak for the others. I am probably as ASD as other adults who say that here, I just don’t choose to be diagnosed - but I would not be waving this about as a banner to give me more of a say on anyone else’s life or child. That’s like being a bully.

However I would champion humanity, tolerance and kindness to other human beings. I would stick up for a colleague who was being belittled because they were overloaded with noise, I would take time for someone who had a speech problem to utter his words, I would fight for equal rights on pay.

I would not attack someone if they used the ‘wrong’ terminology on disability but who was clearly trying to be respectful.

I would not put down a struggling parent of a child who could not speak and who was self harming with frustration - who wished there was cure to help her child to speak. I would not put that parent down if they were very angry that other adults were telling her that the world being more tolerant should be enough, and that she should not wish her child to stop self harming or start speaking as that was not accepting his difference.

No one who is not a parent of or a child who cannot speak - can ever have an idea of what it is like for the parent or the child. So do not preach to us it is arrogant and damaging and unhelpful.

However one thing is common, parents of kids who are going through severe difficulties with autism are coping with extreme demands and need all the support they can get.

Suki I'm always amazed it doesn't knock DS out, his whole life he has hovered between the 2nd and 5th centile. He is a little heavier now but still only around the 12th centile I think so not big.

a woman with HFA, usually degree educated, late dx, in employment and in a relationship

I am none of these things unfortunately, except woman and late dx, which made my life harder, not easier. Please don't presume anything about me. I have no qualifications, my level of functioning is not sufficient for me to have a job, and I am very much alone in my life :(

I never proclaimed to be able to speak on behalf of your children. I don't know them. I was just expressing my annoyance at how autistic adults are almost completely crowded out.

Nikephorus thank you I was worried i was going to get a biscuit I'm sure someone will be along in a minute to give me one.

I think we need to be very careful that we don’t play down the struggles of people who externally appear to be coping very well. They may have different struggles, they may cope well 99% of the time however that doesn’t mean their struggles are any less real.

I think the benefit of the likes of wii.i.am and chris packham speaking out is that it does help to highlight that autism is nothing more than an umbrella term

Hmm I'm not degree educated. Yes I have a family but even when I was able to work holding down a job wasn't easy.

BishopBrennansArse o/t but I love your username

world I didn't say you were any of those things.

Autistic adults crowded out? On a parent's thread talking about their children?
If this was a thread by autistic adults you would have a point but it isn't. If you have a thread discussing your childhood and a bunch of NT adults swoop in and try and put you straight you would be right to be pissed off.
But that hasn't happened.
What happened was you trying to shut parents up.

Parents get shut up every day. By their friends, family, teachers, doctors, HVs and all manner of professionals. Which is why they need space to talk about their lives and their children.

I can assure you that I was not trying to shut parents up

If itseemed that way I can only apologise. But if the statement being made is "I hate autism then yes, some autistic adults might wish to speak up became that includes them