Here are some suggested organisations that offer expert advice on SN.
What does diagnosis achieve?(52 Posts)
For those of you that have children with sn or sn yourselves, can I ask how dx has helped or hindered your lives?
I have 2 dc with sn, one with dx one without. In our situation the un dx'd child has far more needs, requiring every aspect of his life to be differentiated for. Sometimes I am fine with not having dx, sometimes very positive and sometimes it worries me, really really worries me.
I'd love to hear what you feel dx or lack of dx has really achieved for you and your family, emotionally, socially, academically, financially, in gaining access to services and being refused access to things.
I agree that it can be positive to define yourself (in part) by your diagnosis. polts description of stressing the good parts of AS while recognising the hurdles it creates is I think very sound. But I do think that being outside the norm is very very hard, and for some a label given by a professional, will restrict not free. It depends very much on how it is handled and the personality of the child involved.
I think you can of course tailor your response to your child based wholly on observation even with a label, but I'm not sure I could and that worries me. I am influenced in how I perceive ds. One of the reason I so love the Geese is that they make me better. Interacting with school about him made it harder. Regardless of how much I tried not to be, I was influenced by their view of him.
Ds was slow to potty train. He had very little functional language at 3.5 and it impacted on getting him out of nappies. I would have said at that stage that I was his most fierce and ambitious advocate. That I treated him age appropriately as far as was possible and "saw" his intelligence clearly through his disability. One week after potty training I realised how utterly deluded I was. I viewed him entirely differently once he was in pants, I expected more, challenged more, respected more. . I know now that I was hideously influenced by his fat nappy bot, and leg waving nappy changing. I was treating him better (IMO) than school etc, but still falling short. Knowing this about myself and seeing evidence of it in interactions with others/allocation of resources etc I have to conclude that dx would have some negative impact. For some that will be vastly outweighed by the positives.
I too have had the "is he autistic" nonsense. My personal feeling is that unless you would discuss other medical conditions your child might have, just politely say "Not as far as I know. Why? Is your ds/dd?" , it is also very gratifying when someon talks about being "normal" to use a lot of descriptors like "average" or "run of the mill" when describing their little darling.
I do think there is more of a stigma with neurological dx. It is still relatively normal to use disableist language about invisible neurological conditions (I catch myself saying things are moronic and idiotic all the time and wonder is this really ok). I suspect that how useful the dx is in part dependent on how informed the person hearing it is.
I do worry about erosion of human rights, like the state in charge of educating our children thing. I worry that we are not so far from "lock up all the strange ones where they can't bother us normals" mentality. I believe vast majority of children with neurological disabilities do not recieve the education they deserve and I don't think anyone cares very much about that. I think the on going cost of that situation both financially and in human dignity is beyond stupid and shameful.
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