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

Sphil - is one of your guinea pigs sitting on return???

She won't reply. She's got a guinea pig in one hand and a screwdriver in the other....

Sorry all - computer suddenly developed a mind of its own and started copying my post automatically. Have reported myself to MN and asked them to delete the copies.

I do love you Silverfrog, but not QUITE that much

at thought of guinea pig sitting on keyboard. No screwdriver either r3dh3d - i resorted to the simple technique of bashing everything in sight...

right, i realise this thread has moved on a bit, but I can't get away form the "acceptance" issue.

firstly - MrsT & sphil it's pretty crap having the child who does nothing, isn't it? dd1 has vastly improved now, but I will never forget the vacuous cow HV who looked at me like I was bonkers when I went to her for help when dd1 was about 10 months old - I described dd1 sitting there doing nothing (and I really mean nothing) and all she could find to say (after the usual isn't she beautiful platitudes) was that it must make doing the housework a lot easier, and I was very lucky as most people with a baby never found the time to do the hoovering...

so, back to the acceptance thing.

I have a real issue with not talking about the bleaker sides of autism, because i do not need society accpeting dd1 as their view of autistic. She is who she is, not another statistic in the autism numbers.

The problem with the sanitising of autism is that people do get shoved into boxes that they don't fit into - even dd1's school are guilty of this and there is nowhere more accepting (ASD pre school).

I do not want a world where only the nicer sides of autism are acceptable, and the nicer thoughts about autism too - that is not goign to help dd1 get anywhere. People need to know the whole picture about what they are taking on if they work with her (ie in a job situation), not just think that if they are "accepting" of autism everyhting will be fine.

I have met lots of poeple who are very accepting of dd1, but that does not stop dd1 being scared of them. Or scared of the wind, or blue cars, or whatever it will be next week. Acceptance does not make it any easier for dd1 to see a dog walking about (in fact there is another case in point - I have totally accepted dd1, as she is, but that has meant we need to rehouse our much loved dog. Having both of themis not possible. Another impact on my life that I accept but do not like - my dog has helped me enormously over the years, but now I cannot keep her.)

blimey, sphil - what happened there?

would love a move to the West Country, but dh needs ot be able to get to London daily, and I already don't see enough of him due to his commute (and it's "only" 80 mins each way now)

Some pages ago , Cyberseraphim asked "religion is analogous to disability regarding discrimination and what is reasonably foreseeable. I don't know it would be possible for anyone to know everything about ASD - and to know that some (perhaps most) are like my brother and are indifferent to others' opinions whilst others are not. If we are confused and we all live with ASD how would anyone else know? "

You'd know the basics because you do the basic research beforehand and keep it up to date. You then know the specifics because when someone turns up with a disability and announces it to you, you find out what they need by asking them or listening to what they say. So if they say "my brain crashed when X happened - can we negotiate for better safety?" you negotiate as reasonably and sensibly as you can.

No-one need be psychic enough to anticipate every problem, just the big ones. But mumsnet did know about me - I'd sent them enough info to give them a 'heads up' about things.

I'm just asking if someone will help me or at least come up with some ideas. No luck so far.

Er, does that make sense?

silverfrog, yes I agree with you

No more stupid poems is the best idea on here I think. The only point of agreement from everyone, having just re-read this whole looooong thread, is that the poem went well over the top. It ignored, crucially, the love we all feel for our kids - despite the havoc that autism has created.

But people should be able to express their own feelings about autism and other SEN on here as positively or as negatively as they like. It's a safe place for us all, I think, not least because of the anonymity. And if people don't agree with any views expressed, they should also be able to express that - perhaps slightly tactfully, but not so tactfully as to be dishonest? Does that sound like a plan?

sickofsocalledexperts, yes and yes

Especially yes because I think you're helping me understand why I reacted so disastrously to something that portrays all autism as it did - because it felt like it did for me for all the years when I went from the hell of what was going on at home, navigated the hell of the sensory problems, and experienced the hell of the bullying. Then more sensory hell to get home to some more hell.

I so could have done with someone who actually cared enough to have said or done something positive, anything really. I think it's why I try to stay positive now, not because I don't acknowledge what hell can feel like or don't know what hell can feel like, but because I've had all the hell I can take, and maybe I can say something that's cheering or hopeful for someone else ?

I completely agree silverfrog.

Some of the sanitising of autism has occurred because really only a small proportion of autism is represented in any quantity in the research literature. Children who can't sit in a psychology lab and do tests don't, on the whole, end up as research participants- especially in the UK where the cognitive school is so strong. So cognitively at least, autism is represented by one small group- and this has 'become' autism. Even though on the whole this group is nothing like my son at all and their problems are not my son's problems. Of course policy etc is driven by research findings - and so it becomes a bit of a circle.

That's why I'm trying to get the researchers to look at more research into LFA, MrsT, because it's something you'd mentioned before and I think you're right that far more needs to be done and understood about it. We've got a brain scientist and his team contemplating various possibilities at the moment.

It would be good news if it happened. The difficulty is a) the cooperation from the child (so big ethical issues if you're using any intervention) and b) getting the work published. I know previous work on LFA has taken years to get published and I am finding much the same. I realised after several rejections with bizarre feedback then attending a conference that part of the problem is people have limited understanding of the group I'm even talking about. The research community isn't really even aware they exist.

5HT (serotonin) system research happening at the moment, which should be published some time later this year through Kings College, London. Heavily implicated in an increase in sensory motor behaviors, including whirling, flapping, pacing, banging, hitting self, rocking, and toe walking. If we can find out more about the pathways for it, it could lead to very major possibilities.

See, we can be useful, us Asperger people

Amber - I used to take a health supplement/vitamin called 5HTP, from Holland and Barret, that a pal of mine told me helped calm her down. Is it related?? And do the researchers think toe walking and other stims are possibly from too much serotonin? That would make sense to me. Sort of the opposite of depression?

They do think it's heavily related, yes. Precisely how is the issue, though.

Some work has been done, but not enough to really narrow it down, hence the illustrious brain scientists staring down their microscopes this year on this very topic. They know that the serotonin levels are very different in autistic brains, and they know that this is connected with the way the brain copes with sensory inputs. It doesn't link to the social stuff as far as they know, but it's very related to the behavioural stuff we see typically in profound autism, which they suspect is a very strong coping mechanism to try to deal with the sensory avalanche of sensations which are coming into a brain that can only handle a tiny bit of it thanks to the chemistry problems affecting the wiring.

Same principle as if you take a big bite of something you expect to be sweet and it turns out to be intensely eyewateringly instantly sour - you'll notice you rock, flap your hands, yell, pull faces - anything to distract your body from the intense flavour.

If the whole world was that intense all the time, you'd be behaving in pretty bizarre ways all the time.