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

Well if there's any other ways I can f* up, I'm sure I'll have managed them all by the end of today

Hi Davros, apologies in advance for the length but your recent posts on another thread about your sister and the impact of her undiagnosed ASD really stuck in my mind, as did your comments about the sanitisation of ASD. I'm wondering if sanitisation is the price we pay for the progess we've made.

My DB1 (brother) displays AS behaviours. DB2, 20 months younger and sharing a room until they were 15/13 has been strongly affected. We were a dysfunctional family, the low points being marked with violence.....

The effect on your life seemed to come just as much from your parents' attitude as from your sister's ASD directly. Is that right? That was certainly the case for us - I remember my father screaming at my mother that my DB1's problems were the "Johnson curse" (her maiden name). And my mother retreated to a fantasy world (for about 15 years on a daily basis - every mealtime I'm talking here) in which another family became her "subsitute" family. One good thing is that we don't do money arguments so things have got better over the years.

My DB1's AS/HFA is clearly at the milder end - he can't read emotions or do reciprocal cuing but he remembers your birthday and is dutiful. Playground bullying was hell but you don't have to be on a playground for ever. So just a little education and awareness could have resulted in his needs being met quite easily. And that would probably have averted quite a lot of the depression, the disgust at his failure to make friends, the anger, the fantasising, the violence and the overwhelming sense of shame that hung over us as a family.

Now, fast-forward 40 years to what you say about sanitisation. This is partly a language problem. Once we start to twist the language and to describe a problem as a "need" or, worse, a "gift", then we are going to lose clarity. But so far as this board is concerned, I think it's partly also society's taboo against saying that autism has affected the mother-child relationship. Even posts like the one from tattifer that said "I love my daughter and can, almost every day see her before I think about her asbergers. Then she moves or speaks and all the awkwardness between us comes rushing in" are very rare, yet I suspect this describes the way my parents thought about their son and hiding those feelings led to far far worse feelings and things.

I also believe that the rush to argue that up to one in sixty of the male population "has ASD" defies common sense and increases the sanitisation process. The wider the group you target, the more the population accepts people exhibiting ASD behaviour and learns about an individual's needs (good thing)but conversely the greater the focus on people who don't really need a medical diagnosis, just a bit of understanding and intervention and teacher training (I think my parents could have learned what they really needed to know in a week when DB1 started school). I sat in the paed's office last week being told that "most" mothers would find it "very hard" to cope with a child with language delay who dislikes wearing shorts and passes trains back and forward in front of his eyes and can be withdrawn at nursery, and I wish I had followed my instinct to laugh out loud, because I know from my childhood what it is to have family relationships torn apart by a hidden disability and we do not have that problem - Yet. The biological facts are there and I told the paed I might well be back. But for now, it would be frankly self-indulgent of me - or a sign of mild depression - to think of us as a family affected by disability as the paed. was enthusiastically inviting me to do.

I don't know what my conclusion is and this probably makes no sense. We certainly don't want to go back to the bad old days. Is sanitisation and the silly tendency to suggest that all needs are equal the unfortunate side-effect of the progress we have made?

I think the definition of autism has been widened and shallowed but I don't know why. Twice at the ASD hospital unit waiting room I have seen children who seemed (to me) not remotely autistic - at the same time there are children on the actual program who are very severe -non verbal/in nappies. I just can't believe this is what Lorna Wing expected to happen when she proposed the idea of a spectrum. I wish we could just focus on each child's issues (and I'm certainly not saying the waiting room children did not have problems because obviously I don't know their whole story). DS1 like many in somewhere in between but I really don't want to label him as middle functioning autistic (MFA) because what actual use would that be? I get the feeling at times though that professionals see autism as a digital thing - either high or low and don't know how to interpret the 'inbetweenies'

Uta Frith discusses this in her 'Short Guide to Autism' book where she seems to be arguing that the dx should not be applied when there are either overall lows or overall highs - that autism means strengths in some areas and weaknesses in others - the classic jagged development. I'm not trying to upset anyone , I'm just passing on her views - though some might think she started it all by translating Asperger into English!

I see exactly what you mean - but the children in the waiting were having full conversations with their parents. I'm sure lots of people in Starbucks never think DS1 is ASD because he sits quietly and nicely and even asks for cake but if they saw the bigger picture, they would see how significant the problems are. But that is down the view that children are either 'severe' or 'high functioning' and the reality in between is overlooked - but then I would say that

My mum used to lie awake crying because she was worried sick how I would cope when I left home/had to get by on my own. This was when I was a teenager. I never actually thought how my being Aspergers impacted on my sisters until Davros mentioend her sister, so I've now emailed my older sister to ask her for an honest account. I stressed "honest". Tattifer's description of reciprocal love rang such a bell because I have never been able to initiate saying "I love you" to my parents, indeed anyone other than my children or DH. I was only able to say it to my parents in reply when I got to my mid to late twenties. I don't do hugs easily, apart from big bear hugs and I love cuddling my lads. I can remember being 9 and my mum had made supper for us, so normally I'd have just said "thank you". This time I got mixed up so I kissed her on the cheek, which was somethign I never did and it upset me terribly because as far as I was concerned the expected time for kisses was at bedtime and no other time. At the risk of too much information foreplay with DH is not something I enjoy, I find it very difficult and whilst once things get going I'm fine with the more direct actions, initiating or even accepting contact in those areas is very hard for me. Not impossible, but hard. But these difficulties do not mean I don't love, because I do.

Thanks for that post Lingle, you certainly seem to understand what I experienced as a child and the fact that it was a lot to do with my parents' attitude and they too could have quickly learnt so much about how to help my sister and therefore the rest of us. However, in those days that wasn't going to happen so they, like your mum, made their own version of reality built around and accommodating my sister. As I said in the other thread, she was treated as special and it was only when we got older and understood more, that me and my other sister realised that she IS special, just not quite in the way they thought!
I see so much happening on here that is just like my sister in RL, always making it very difficult to challenge her because she didn't "get it" and would either ignore anything she didn't like or didn't fit in, or she would get upset and sometimes even hysterical and aggressive. The fact that someone with AS can be attention seeking would probably be a surprise to a lot of people who don't have direct experience. No doubt I will be taken issue with and I should regret posting this, oooer.
It does exasperate me when you hear that cobblers that "everyone is a bit autistic" and that every oddbod has AS. Someone with a diagnosable, identifiable "condition", "disability" (you choose) is VERY different to someone the other side of that line.
As I said on the removed thread, to me my sister is as disabled as DS but she is very different, being "independent" but I really don't think she is happy some of the time and she can't understand why and, just when we start to think let's say or do something, its like it never happened. I think it is to do with how much attention she gets and how much opportunity she has to let out her amazing and complicated thoughts, her interpretations of situations, facts she has gathered etc. She gets a bit low, lets out a torrent and goes back to her smooth and unaware existence.
I've mentioned on MN many times a child of a friend who I also think is as disabled as DS BUT he has no learning disability, is completely verbal etc but his behaviour is very, very challenging. I have said many times that I think behaviour is the big differentiator, not IQ, verbal ability etc.

I"t does exasperate me when you hear that cobblers that "everyone is a bit autistic" and that every oddbod has AS. Someone with a diagnosable, identifiable "condition", "disability" (you choose) is VERY different to someone the other side of that line."

Thank you very much for this. Seriously.
I was not treated as "special" by my parents. About the only thing I can think of is that at primary school there was a sort of tendency to make more allowances for me in some small areas. Eg we went swimming and I was worried about the deep end, so whilst all the other pupils were being made to dive in and swim under water I was allowed to swim about in the shallow end and I wasn't pushed into doing what the others had to do. When a group tried to tunnel their way out of the school gardens - and naive me thought they were actually gardening and procured spades for them - the headmaster let me off the punishment. But at home I was either treated the same as my sisters or when dad was really exasperated with me he'd call me "stupid".

Tclanger I have read your post but not sure why you are asking me specifically to read it? A lot of how you describe your ds is how Ds1 is by the way. Other parts, no, he's not like that.

Amber - fwiw I read every word of your post

Nooooooooo I for one dont want you to leave MN. I dont think anybody does tbh.

I understand why you get things confused and take things personally.
I think it is rather harsh of certain other posters on here to interpret your posts the way they have tbh.

Personally I try to regard parenting my son with aspergers as a priviledge - atm I would wish it away if I could because he is very unhappy, but a large part of what makes him so wonderful is because of his Aspergers. A catch 22 situation, so tbh even if I had a magic wand Im not sure I would know what to do

It is interesting as my experience and understanding is that false dxs almost NEVER happen. Maybe times have changed and that is no longer correct although I still haven't come across one?

The grilling we get (strange expression) during the interviews for diagnosis and the multi-stage questioning of everyone we know who could answer questions about our childhood is very, very thorough.

I was certainly told that no way could I have been given a diagnosis without it being clear from direct evidence that I was really struggling in areas of my life because of it. If it's just a 'set of personality characteristics', they won't diagnose.

Aah, I get you now Tcalnger. My dad might have been one of them. Lots of AS traits but I would not have placed him on the spectrum. With myself I can not advocate for help, can not initiate asking for help, without the support of my DH I would struggle a lot more than I do, but I'm able to work round things and the things I can't do they personally don't bother me. I don't care if I can't drive. I don't care if I am never going to be able to manage other people in a work capacity. I don't care that I haven't brought some personal items since I left home as I don't cope well with the thought of certain events. I don't care if I am thought of as odd, or quiet or immature compared to others. But my Ds1 who has significant difficulties with his language and understanding, I care a lot about him. I don't want him to go through the difficulties in communication, to be wanting to say something and struggling to do so, for whatever reason and I work very hard to help him with this. If he gets to my level of understanding at least I will be happy for him.

Makes sense cyber, I also think that there is a tendecy to divide into HFA and severe where 'severe' ranges from pretty verbal with an ability to use language just not put together properly and with pretty much no leraning disabilities to non-verbal with very severe learning disabilities (which is quite handy for my research when recruiting participants but does actually mean that you're dealing with a very wide ranging population who again have many underlying things going on).

Also agree with Davros about behaviours. I can think of one child who is very much the most able in his group by quite a distance (in terms of language etc) , but also, my goodness, very very needy and actually the hardest to work with and in need of an extremely high level of support.

We're lucky with ds1 as we have the learning disabilities, lack of speech and the behaviours

Unstrange Minds makes some very interesting points about diagnosis.

I can't say Davros but am a member of a different forum full of parents who believe their kids to have been incorrectly diagnosed with autism. Some have colluded with the process in order to get a place on a particular programme (the forum is US-based).
Some clearly have a "oh no! he's not one of them!" problem going on but others seem very genuine.

Oh is that the late talking children forum run by thomas thingy Sewell??? Long time since I've read his books.

I think its more of an issue in the States perhaps, but there is a tendency to medicalise in the states. For example I've heard American children with supposed apraxia who have sounded pretty clear to me! (And ironically it took us about 7 years to get the apraxia diagnosis for ds1 and he can't make sounds at all!)

I remember once really tryign to explain about Ds1's echolalia to someone and how he struggled to use language to communicate effectively and at the end she heard him repeat back a word and just said "oh did you hear, he said, 'blue'. isn't that good?" It's one reason why I place a big difference between speech and communication. I was far, far quieter than Ds1. I had greater difficulties in being able to get the words out to talk. But when I did my use of language was normal (or normal in the sense that it made sense, there were other issues going on in how I responded and spoke to people). Ds1 who is very verbal (and who is going through a huge echolalic phase at the moment can chatter away but his use of language is disordered, delayed and his understanding is significantly behind other children his age.