My son Adam has been in “therapy” since he was 20 months of age. I have reams of notes and binders used to create his programs, track his progress, develop his plans with other professionals who use ABA, RDI, Floortime and other methods. I have a decade of experience with autism education and various therapies, many of the approaches dubious. I’ve witnessed improvements in the field, and I continue to have a watchful eye. I predicted Adam would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful to be in a system that is set up more for him rather than completely disregards him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.
ABA is something we’ve had to contribute to improve upon, because it’s really hard to change the system. To me it is in part a method, and in part a label for a type of education that in some schools, uses other methods in addition. Adam and I have to “fit” into a mold and make it the best for him -- those are our barriers and limitations for now. We work to fill in the gaps ourselves.
I learned and taught Adam how to type ... by myself, by reading, studying, and consulting others with expertise. Now his school builds upon what I started. I have now five years of typed dialogues between Adam and myself, methods, and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope such approaches will become more mainstream. I am not alone in this among autism parents. We make our own roads and other parents will share the work they’ve done. (Recently, I was asked to write a book about teaching Adam typing, and may do so after this year of finishing my M.A. in Critical Disability Studies.)
We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person, as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all affected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.
It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which is so exclusive and politically limiting to us, we can understand the method -- but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity.
Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families -- by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.
If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me). “Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] -- for example, by not being as depressed as predicted -- run the risk of being regarded as in a state of denial and in need of further psychological guidance and counseling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.
It has been challenging to write my blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publicly lament in the same fashion as others do. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.
The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have, to date, been oppressive and exclusive against the disabled. Paul Hunt first challenged what we call today ‘ableism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).
The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)
Impairment: lacking part of all of a limb, or having a defective limb, organism or mechanism of the body;
Disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).
This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability. (p. 30).Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing others’ need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.
The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone -- even someone who has no movement, no sensory function and who is going to die tomorrow -- has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)----
Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.
A version of this essay was originally published at www.esteeklar.com.