Aspies for Freedom
Dear Donna, I am co-founder of a group called aspies for freedom. I have found your books and approach very inspiring, I am diagnosed with AS and my son is too. One of the main aims of aspies for freedom is to fight against the idea of a cure for us. We dont want to lose who we are, and have future autistics wiped through genetic screening. Could you give your opinion on a cure, or support us in anyway, have a look at our website? Many thanks for your time, Amy Roberts.
Thanks for your letter asking for my view on Aspies for Freedom and your concerns about the push to ‘cure’ Autism. I felt the reply and the topic were worth a wider forum so I’ve sent my reply back to you but also out on the airwaves.
As a consultant in the field of Autism for the last ten years I have seen many people diagnosed at both the Autistic and Asperger’s end of the spectrum.
I have found that Aspies are a far more homegenous group than those with Autism. The only thing the whole lot generally have in common is that of having a different style of information processing, generally in that they are ‘mono-tracked’ in a ‘multi-track’ world but saying that, the underlying causes of this are different for different people. Where those causes are to do with a delayed development in neurological integration these things will likely be fairly fixed for life and I totally support you in saying that this style of information processing needs to be supported on all levels as that person’s ‘normality’. This is often far more the case among the Aspie community than among the Autie community.
In the Autie community, the delay in neurological integration is often dramatically improvable where gut/immune/toxicity issues are treated so that information processing capacity is freed up and neurological integration ends up kicking in. Immune deficiency is known to effect around 20% of people diagnosed as Autistic and I’m sure you’ll appreciate that it would be equally inhumane to treat immune deficiency. Personally, I was sick every six weeks for most of my life, with bugs lasting up to 3 months at a time till my lungs were too weak to cough and I had to hang upside down off the side of the bed to drain much from my lungs. I feared suffocation in my own lung infections, my throat was often too infected to swallow without great pain and I spent most of my childhood with chronic ear infections. So you can appreciate that such things MUST be treated and cured and that if that decreases the level of someone’s information processing issues, then so be it.
Up to 60% of children with Autism have Salicylate intolerance causing them sometimes painful and socially limiting inflammatory bowel problems, often excruciating excema, recurrent infections and fragmented vision so severe they may never be able to read or recognise a face and may be ‘object blind’ and essentially stuck in a purely sensory world. Whilst I’ve been there and loved that world where interpretive meaning did not exist, any Aspie who can enjoy reading and books and recognise the face of their partner when walking in a supermarket together will know how essential treatment for such toxicity issues can be. Auties with this severity of problems are not asking to be non-autistic, just to be less terrified and gain access to the world of meaning. Most who do so won’t be non-autistic but in fact simply more Aspie than Autie.
Up to 30% of children with Autism will have Rapid Cycling Childhood Bipolar according to the National Autistic Society UKs website. This bipolar state in its extreme can fluctuate up to several times a day and result in severe self injury, violent behaviours and real endangerment to self and others. In this state I have attacked myself ferociously and had no idea this was my body, I have kicked people down stairs, I have run at furniture over and over smashing myself into it, I have believed I could fly and wanted to jump off buildings and I have believed I could control traffic and would walk out infront of oncoming cars and the emotional extremes from before age three left me traumatised at the overwhelming power of emotion to the degree I became terrified of feelings and being overstimulated be external initiations and the constant extremes and utter loss of control severely effected peronality development, trust in interaction and sense of self.
The contant taxing of my health by such states underpinned much of the immune deficiency meaning it condemned me to chronic infections and eventually chronic fatigue. It would be utterly inhumane to not treat a severe Bipolar condition in an adult and the same is true of an affected child where such Bipolar is being labelled part of their Autism. So again, whilst I of all people no the glories of Bipolar, I acknowlege what it costs and takes and I would impose on no child that they be refused treatment for a traumatising medical condition. One could argue the same is true of children who have severe endogenous Depression leading to severe rigidity, mutism and withdrawal. It would be inhumane to refuse any person treatment for depression, including a child. Of course environmental causes for depression should always be addressed first.
A large percentage of children with Autism have (often treatable) Obsessive Compulsive Disorder and Tourette’s and in a severe degree this can be overwhelming, bring on depression, severely exaccerbate social phobia and make children prisoners in their own body. I have had compulsive coughing of Tourette’s so badly at 2 years old that I was hospitalised for coughing up blood constantly as a result. I have had tics to slap myself to the degree my jaw was riddled with abscesses. I have had OCD so badly I became terrified of breathing in an uneven fashion or sleeping for fear I’d crease a sheet or move from the exact centre of the bed so was compelled to deprive myself of sleep to the degree I was utterly imprisoned and miserable. Obsessive Compulsive Disorder is NOT Obsessive Compulsive Personality and I would never suggest people breed out personality traits. Obsessive Compulsive Personality is seen as part of the self and is able to be constructively channelled and should be constructively supported in our society. OCD by contrast is a disabling and rigid condition which the person themselves does not identify with and instead feels imprisoned by. So we need to be clear that in supporting one we are not condemning people to imprisonment with the other.
Many Aspies have Avoidant Personality or Schizoid personality making social involvement rather different, if not sometimes avoided. Again these things need to be respected, supported, understood and these people should not be made to feel inferior or broken. But my experience is that whilst around 60% of Auties would fit these personality traits, another 30% do not but have a severely disabling anxiety disorder I call Exposure Anxiety. Exposure Anxiety, like OCD and Tourette’s is not felt as part of one’s selfhood but it does involve a chronic fight-flight state in which one may be imprisoned in involuntary and compulsive avoidance, diversion and retaliation responses and unable to do for oneself, as oneself or by oneself. It is a state comparable to an emotional ‘palsy’ so when the person may be compelled to vomit up food they wanted to eat, compelled to hold on for a day because they desperately need the toilet, compelled to starve themselves because they are aware they are hungry, compelled to reject or go without a jacket when they know they are cold, diverted into any direction but the one they actually want and compelled to reject any attention or help that triggers ‘exposure’.
You can just imagine how difficult this imprisonment is and the impact of despair and a severely impaired relationship with one’s body and communication. Any technique that allowed someone with Cerebral Palsy to connect with the world I would utterly support. The same is true with Exposure Anxiety. Do I believe in treatment for Exposure Anxiety? Yes. Would I say the same of Avoidant Personality or Schizoid Personality which may look similar on the surface, no probably not, I’d merely want them supported.
Around 30% of the children with Autism I see are ‘meaning deaf’, sometimes severely. Where those with Asperger’s know what it is to not get ‘the significance’, ‘the point’ and may live in a literal world, nevertheless they live in a world of interpretive meaning. For those with Autism who are shut out of interpretive, even literal meaning, they need accepting, supporting, yes, but they also need the same assistance we’d give a deaf child. They need gestural signing, the use of representational objects to capture ‘experience’, and the treatment of any gut/immune or neurological organisation issues limiting their access to interpretive processing. I was a meaning deaf child. I lived in a world where people talked on the TV, everywhere but I couldn’t understand their speech. I could not think in pictures; the fragmented vision of my childhood had made forming pictures impossible, I formed impressions, and thought in the sensory experience of something.
If you showed me a picture it was a series of shapes, lines and colors, if you gave me an object or used gestural signing or brought an object to life, bingo, it meant something. So the representation of those ‘like me’ as all ‘thinking in pictures’ also offends and whilst I cannot think in words either, I personally feel excluded by anyone who paints all ‘Autistics’ as thinking in pictures, especially when a major part of my challenges is I cannot form pictures internally and am forced to use external objects to hold concepts. Central Auditory Processing Disorder is like being always a migrant who can never grasp the language, always closed out from the world of meaning and left behind from conversation, books and most social inclusion. I had perhaps 10% receptive language at age 9, 50% by my 20s and the 50-70% I have now is due to diet and supplementation and brain gym and tinted lenses (by reducing the visual issues I improved the auditory ones) and employing techniques and I feel that has given me a world of inclusion and getting out of my head and into the world I’d otherwise not have had. I would deny nobody in this situation help and treatment for any underlying causes of a severe Central Auditory Processing Disorder for who am I to insist others should remain ‘meaning deaf’ because I believe they are all happy being this. Of course when one can’t share in a reality of receptive language and interpretive meaning there is the big wide (sometimes empty and fragmented) world of being in one’s own head (deaf children often were the same till given sign language) but that doesn’t constitute choice, access or equal opportunity. We can no more deny the needs of ‘meaning deaf’ people with Central Auditory Processing Disorder than deny signing and lip reading opportunities to those who are deaf.
Whilst most Aspies have a high IQ score, many Auties do not. Even after getting a university degree, my IQ score was just under 70, putting me in the ‘retarded’ range. This is an utterly biased test based on non-autistic reality and reliant on the ability to use visual interpretation and process written language. However, the fact remains that those who are like this will have some severe recognition and comprehension problems in daily living, generally more extremely than most people with Asperger’s so whilst Aspies must be recognised for their high IQs and interpretive abilities, they must equally accept their are those who wilst needing to have thier own different intelligence appreciated, might equally need to have their interpretive weaknesses equally acknowleged without this meaning subordination or loss of rights to control their own life. The truth is some of us are Autistic Savants and that for those of us with severe receptive processing or receptive learning challenges it would be extremely socially unfair to assume us all to have extremely high IQs akin to our Aspie cousins.
I love my Aspie friends but I although I can write like a genius and in sensing and mapping pattern I’m equally at a genuis level, I can’t keep up receptively with their verbal language nor read their books beyond much of a 7 year old’s level (but I can scan them), and after 20 mins this can reduce to that of a 3 year old’s comprehension (and I can still flod my unconscious mind with these patterns which will eventually be processed back there in unknown knowing). These differences need to be acknowledged and respected not just by non-auties but by Aspies who sometimes assume their reality also represents all facets of the Auties reality. Most of my life I feel like I’m an animal more than a human being and using mind with conscious awareness is mostly still allusive or short lived for me. By contrast most Aspies rarely know a world without constant conscious thinking and connection with having a mind. So these things are very different and I think many Auties with low or very low IQ scores would run rings around both non-auties and many Aspies in the sensing stakes and when Aspie people celebrate and publicise their own interpretive intelligence, whilst I’m glad for them, I personally feel excluded (no offence meant).
I do agree with you that diversity must be respected and appreciated. I respect that what is NOT harming someone or others or NOT severely limiting their voluntary use of their body, their relationship to their emotions, the development of interpretive thinking, their access to acquiring receptive language or visual meaning should be appreciated in its own right. Equally, just as their is an extreme difference between someone with mild cerebral palsy and someone imprisoned by it, those who do not have severely impairing and limiting conditions must be respectfully aware that being part of the same spectrum does not give any of them a right to impose one set of politics for all where the needs at some other end of the spectrum may be dramatically different.
So I totally respect in all people on the Autistic Spectrum that there are things which do not need treatment or cure and that in many people with Asperger’s there is nothing they are suffering from unless they are made to feel this way by those who don’t understand them. But, equally, there are things in some people which are often called a part of that person’s Autism, where it would be inhumane to withold treatment or cure. As good delegates, advocates and humanitarians, we need to understand this spectrum has many colors, not one so when we discuss unity, it should be in that context. Diversity means diversity not just in society but recognising diversity in the entire Autistic Spectrum. Whilst I utterly agree that Autism Spectrum Conditions and their components should not be genetically bred out and that it is a supremist imposition to think that should be justified, I do feel that treatment needs to be given to those who need it for the things it is actually needed for and not imposed where a changed environmental approach is far more appropriate as ‘medicine’. I have fully covered these arguments and issues in my current upcoming book, The Jumbled Jigsaw; A multidimensional Approach to the Cluster Condition of Autism which I believe may be out next year.
Feel free to use this piece in it’s entirity only.
(copyright 2004 Donna Williams)
Thanks… Donna Williams www.donnawilliams.net