So are only threads celebrating autism allowed?

[daisy5678]

I am really truly sorry that the poem upset people and I didn't like it.

But I am so so so furious that the thread has been deleted and I wonder what is next...if someone writes a post saying that they are upset with their child's autism dx, is that deleted as disablist? If I write a post saying that I hate something to do with what autism does to my son, will that be deleted?

Like I said on that thread, one person's reality is not another's. One person's autism is not another's. To ban anything that dares to suggest that autism can actually be quite shit just seems to me to make those who find it hard to cope with feel like they're weak or stupid not to celebrate the great joy that is autism.

Or maybe it's me that is wrong to find this wrong, and to find life really quite hard at times and to dislike the fact that autism, in my son (who is really quite high-functioning) causes really quite horrible things, like suicide attempts and stabbing others and self-harm.

Maybe I should just celebrate all that and keep on smiling smiling smiling, and tell anyone who dares say anything negative about autism that they're wrong, because it's all fine and perfect.

But I can't do that, so I guess I'm not welcome on here anymore. So on an SN thread for parents, we can't dislike anything about our children's SN

Fio, again I agree with you. And it makes other parents who have just got a diagnosis hysterical in case they don't do the Right Things to turn their child into a genius of some kind.

I get pissed off with the "oh he must be a genius, what's his Special Skill?" thing too. Fucking Rainman has a lot to answer for

[mutter]

I've taken to telling people I can walk through walls . Some seemingly believe me.

Would it be a good idea to start a new thread?

my ds is HFA but that was all him nothing ive done thats how we knew in first place he was different to other children

with him its sleep if he sleeps then he achieves more

his speech is all the effort ive had to put in and learning of danger etc its taken alot of hard work but as for the rest thats all him its who he is

Fio- I think you might be right about severity or impact on life that makes something relevant or not. I have found more in common with some parents of kids with CP rather than some with autism - just because the impact on our lives is more similar.

We've worked incredibly hard on ds1's communication - day in day out (as have his school and other pros). Aged 10 he's still non-verbal. I suspect he always will be, but it's not through want of trying.

i knew that would get taken wrong wasnt what i meant at all all im saying is my ds is HFA and i dont say his like that because of me thats all nothing personal was just saying the only thing ive worked with him is with speech

please dont take it personally i know everyone works as hard as each other never once was i saying different its just sometimes its hard to know the right thing to say wothout sounding braggy to someone else

we all work hard

well no i do know that of course thats why im said i knew it would sound wrong im not always good at explaining myself im aware of the spectrum and capabilities of children etc my friends ds is non verbal and i know she has worked very hard with him im not saying he only speaks because i taught him he is still along way off but its because his high functioning that he will do so

but im not meaning to sound braggy or anything at all i dont want to offend people i said wrong thing its hard sometimes as you know you've worked hard with your child but doesnt mean your telling others they havent its just our childrens needs are different

sorry if you feel im offending wasnt my intention at all

ultimately it comes down to something organic. You can't repair brain damage beyond a certain point although yes of course you can do stuff to fulfill a child's potential. For many children their potential may not be to talk or fullyunderstand language or be able to write their name. So if course no therapy in the land will achieve it.

its hard i guess as i know that its taken me 2 yrs to get him aware of road danger that was alot of walks in quiet roads alot of tantrums and throwing on the floor [me not him lol]

and also took till he was 3.6 to start talking so i guess i feel like i played some part but i dont mean it to sound like if you do thsi your child will too or your not working hard enough just i know what hardship we faced to get where we are today i forget others might feel like we are saying its just us that have done this i know its his dx as his higher end

we all do a good job our childrens dx are different so we all dot he best for our childrens needs no one is working harder than the other i love ya all everyones advise is valuable to me and if i ever do say its all me then just silently slap me as i may see something and feel i played a good part but i do know its all about where on the spectrum as my friend has worked harder than me and her child is still non verbal

regardless of dx we all struggle and we all work hard and we all support each other xx

I think you can be excused not being around as much electra. How's the baby? (And how is dd1 coping?)

The sanitisation of autism has caused alot of problems for both my ds's. For my hfa 6 year old, the expectations are raised so high, just based solely on his reading ability. He can barely understand anything of what he has read, and has huge problems wigh processing verbal language, and can not use pronouns, he always talks about himself using his name, and never says "I" or "me". He has huge behavioural issues, can not understand two step instructions, and I have tried so hard with him, I have for years, it upsets me that the reason he is how he is, is because I do not work hard enough with him. My 4 year old has some immediate echolalia, has never developed meaningful speech, even his echolalia sounds like lots of syllables of "ooo-err-ii". I am fed up of feeling that is my fault for not working hard enough with him. Even though logically I know it is not my fault, it is always there on the low days, eating away at me. Also he is 4, and will probably never be toilet trained, maybe I didn't try hard enogh there either.
I bloody hate autism!

I have the same experience with a different type of disability, Deeeja. Just because there are people with dd's condition who manage to become symptom free through physio, it's assumed that dd must be lazy or attention-seeking if her body can't do it too.

It's a lack of imagination, I suppose.

otoh I sometimes struggle with the support forum for dd's condition too, because the posters are the people who really do have it badly and whose lives (necessarily) centre around their disability- so again, a different experience.

It is awful isn't it Cory.
It is as if the world only wants to know about the"beautiful" side of each disability, not the whole reality.

Deeja- ds1 is the same with echolalia- hardly any consonants, just the vowels and intonation. 'eh uh' hair cut 'nee' is school and bridge, 'ee ee' biscuit etc etc Consonants are hard for some reason.

I have no idea why MrsTurnip, but is it possible it's more that the vowels are easier to do? Try it, open your mouth and see how easy it is to say the vowels without much mouth or jaw movement.

Yet, the lives of people with a disability are often far from beautiful. We're only just getting past the point where we're not automatically locked up in institutions or hidden away as an embarrassment: Those with a LD or ASD have four times more bullying in their lives than people with any other disability. The absolute contempt for us in society is extraordinary. Not a hint of happiness has ever greeted me when I've told people I have an ASD. Not once. Not ever. If I'm really lucky, people might say "Oh I'm so sorry".

I see the positive stuff not as an attempt to sanitise, but mostly as an attempt to get people to treat us like human beings, show some respect, see us as potential friends, not freaks. Help and support us if we need it. That's respectful too.

I really do appreciate that parents like us have a bl*dy tough time with our children, or our own disabilities, and need to have the right treatments, therapies, help and support to get life working again. And a space to rant in. But heck, I'd rather see people initially thinking positively about my ASD rather than shrink away from me or think I'm something that's just a terrible tragedy, as if I have no personal value at all. And I'd like them to think of each of our children in some more positive way too. I have enough negativity from my arthritis and scoliosis as well. Want to know what society often thinks of 'hunchbacks'?
Apparently they laugh at us a lot. I don't know why, though.

I don't like anything that diverts help or support away from the people that need it, no.

But I do like to see things that promote respect and equality of opportunity and self-worth, and encourge people to respond positively to the need for the right services.

I think Amber is very right: unless people around can see something positive in the situation they are going to be paralysed by fear and pity and not in a position to be very helpful at all.

But I also think places like this forum can act as a safety valve, where people can let out the bad stuff too.

It's a balancing act, there's no doubt about it.

Cory, that's the right phrase - a balancing act, yes.

Ah, and by "equality of opportunity" I don't mean that I think that all children should be nuclear physicists. Just that they need the same basic human rights and chances to have a quality of life.

I have no idea what people say behind my back but when I've told them about my diagnosis they react very matter of fact about it. Neither incredulous or delighted, which is fine by me. As Ds1 has become a little older there's been less denial about his diagnosis from other people as well.
I agree that it should be a balancing act as well.