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It seems we're niether fish nor fowl?

TheCatWoman

I'm starting to really wonder if some of the problems "the system" has with dealing with us is that they don't know what box to pigeon hole us in. Autism and ADHD, are not mental health issues, although people often have mental health issues too, we're not totally in the educational special needs bracket either, although again we might struggle educationally.

Whilst words like "developmental disorder" are used its such a broad catagory I wonder if it's actually helpful at all? I

I'm coming more and more to the conclusion that using words like "disorder" are wrong and unhelpful. How are we disordered and disordered according to who? I don't see myself as broken and I'm certainly not dysregulated, one of my least favourite words to describe us when we're cross or upset, it delegitimises perfectly normal feelings. Alongside terms like PDA, when we really don't want to do something, do I have PDA because I really don't like the taste and mouthfeel of something, or something else really freaks me out? I don't think so, I think it's a term used to stigmatise normal feelings that no one would bat an eyelid at in a non diagnosed or allistic person.

Obviously being a spectrum theres a wide range of symptoms and not everybody has all of them and but some seem to be far more badly affected than others. But, but??? Why the need to make us sound mad, bad and dangerous to know? It's reminding me strongly of when it was realised that about 10% of the population wasn't hetrosexual and moral panic ensued, were people especially young people being lured away from the straight and narrow by being shown these different lifestyles? Was it catching like small pox or flu, how many of us would be "infected". I see these same sort of panics being caused by the increasing number of people being diagnosed with ND and the self appointed great and good faning the flames and wondering what went wrong? Well actually nothing is wrong, people have always been ND, we just didn't know or we managed it differently, just like we still had an ozone layer before refrigeration chemicals started destroying it and gravity before Newton.

I think society as a whole is starting to realise that there are many more ways of being human than previously realised, it dosen't manifest in skin colour, facial features or other visable signs, but WE LOOK LIKE EVERYONE ELSE, people might not know who they're sitting next to on the bus! It makes it so much harder to stigmatise people and avoid them and keep to our little enclaves of normality, I mean they might suddenly start gurning and dribbling, oh no, like that person over there, oh no, actually its alright they accidently bit a wasp that landed on their sandwich.

Here endeth todays lesson

Disgruntled of Anglesey

Parents

  • I think it’s important to retain Disorder. Autism to me is a disability. I am disordered. I am broken and definitely dysregulated and dysfunctional. I have moderate support needs and don’t leave the house, currently in full Autistic Burnout, the sort where no one can give you a time frame as to when or if things might improve. When I was younger and worked behind the scenes my life was chaos as I tried to hold it together but in truth was increasingly dependent on alcohol and other maladaptive coping strategies. My husband does everything for me.

    My children were diagnosed at Primary school and they have a disability which affects their ability to do things and they need constant support. I remember in 2013 they tried to diagnose my eldest with Austism Spectrum Condition but he got increasingly worse behaviourally and was put into a specialist unit for 5 years. It just became Autism. 

    I don’t think we can just say Autism is a different way of functioning. I think we have to retain an aspect that Autism makes life more difficult. For me it is a major disability I wish I had never been born with. I can’t imagine thinking about it in a different way. My own children don’t plan to have children because they see how heritable this disorder is. My eldest struggles and self harms. They take a number of medications. They hate being Autistic and, like me would change it if they could. 

    If Autism is just a different way of doing things with no deficit, no issues, no maladaptive behaviour, no sensory meltdowns, no restricted diet, no anxiety, no demand avoidance then is it really Autism? In a world where we’re increasingly struggling to get help  support, any sort of recognition from the medical profession, the last thing we need is to soften terms down. 

Reply

  • I think it’s important to retain Disorder. Autism to me is a disability. I am disordered. I am broken and definitely dysregulated and dysfunctional. I have moderate support needs and don’t leave the house, currently in full Autistic Burnout, the sort where no one can give you a time frame as to when or if things might improve. When I was younger and worked behind the scenes my life was chaos as I tried to hold it together but in truth was increasingly dependent on alcohol and other maladaptive coping strategies. My husband does everything for me.

    My children were diagnosed at Primary school and they have a disability which affects their ability to do things and they need constant support. I remember in 2013 they tried to diagnose my eldest with Austism Spectrum Condition but he got increasingly worse behaviourally and was put into a specialist unit for 5 years. It just became Autism. 

    I don’t think we can just say Autism is a different way of functioning. I think we have to retain an aspect that Autism makes life more difficult. For me it is a major disability I wish I had never been born with. I can’t imagine thinking about it in a different way. My own children don’t plan to have children because they see how heritable this disorder is. My eldest struggles and self harms. They take a number of medications. They hate being Autistic and, like me would change it if they could. 

    If Autism is just a different way of doing things with no deficit, no issues, no maladaptive behaviour, no sensory meltdowns, no restricted diet, no anxiety, no demand avoidance then is it really Autism? In a world where we’re increasingly struggling to get help  support, any sort of recognition from the medical profession, the last thing we need is to soften terms down. 

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