Published on 12, July, 2020
All her life my daughter has fought the stigma that being Autistic was defined as, first a "learning disabilty" and now a "disability". It has destroyed her life, made her feel inferior and sapped her self confidence. Then to see the BBC describe autism as a "lifelong disability" made me furious. Then to find that the source of this bigotry is the definition on the NAS website makes me incandescent with rage. I too am Autistic. The NAS does not represent me or my daughter. The challenges which Autistic poeple face are not what we are but how we are misunderstood. For the NAS to insist on perpetuating these myths makes you part of the problem. I can only presume your definition of Autism was written and approved by a bunch of, perhaps well-meaning, poeple who suffer from Autism Deficiency Syndrome and who lack the flexibility of thought that Autism gives us and we, in turn, have given the world the technology which I am using to write this.
The NAS is, first and foremost, a multi-million-pound disability business. It runs schools, care homes and other institutions, and gets paid by local and central government for doing so. The company makes its money by providing services for the least-able members of our community who need "care" and, yes, sometimes supervision. I am guessing that many of the care staff are just doing a job as they would in any other care home, working to feed themselves and their family, and that includes the managers, accountants, HR people, salespeople and publicists. The NAS is, in Weber's terms, a bureaucracy. It follows a "welfare " model of "expert providers" who provide institutionalised care under the guise of benevolence, provided they are the cheapest bidder.
There are many autistic people who hold down responsible jobs - university professors, teachers, doctors, social workers ... and who are beginning to "come out" as neurodivergent. The last thing we need is to have the largest autism charity telling the world that we are the neurological equivalent of Tiny Tim, poor little psychological cripples. Autism is a learning difference that applies to a significant part of the normal distribution. We may need some environmental provisions to function effectively, or to have information presented in particular formats.
It is unfortunate that the only current way in which one can access appropriate provisions requires us to assume a mantle of "disability" in order to qualify under the Equality Act and other legislation. It is not like being gay, black or trans, where one can self-identify as a minority and qualify automatically for equal treatment. We still have to go through the medical model of "diagnosis" or the welfare model of "needs assessment" to have our differences validated. We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Ian said:We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Who is oppressing us? I certainly don't feel oppressed - sometimes disadvantaged or misunderstood perhaps.
Ian said: We may need some environmental provisions to function effectively, or to have information presented in particular formats.
That is like saying wheelchair users only need some environmental provisions like ramps, hydraulic steps on busses etc.
It still adds up to the same types of changes that any group of other disabled people need, but with autism being a spectrum then the range of things is wide, inconsistent in its need and often variable in when it needs to apply.
Our needs are likely too complex to have any one-size-fits-all solution but without the access label of a disability classification then nothing would be open to us.
My opinion is that the existing solution of a disability classification is better than any of the alternatives so far presented as it allows us to request solutions based on our individual needs and not based on other parts of the spectrum that don't affect us.