Is the Neurodiversity Movement a help or a hindrance to Autistics and their families who have high needs and profound disabilities?
According to some people on twitter there is a definite divide. Apparently an author and some organisations specialising in Autism 'Treatments' are determined to spread the message that "Severe Autism" is a medical illness which needs cured and the Neurodiversity movement is a cult of idealism.
Now they aren't wrong when it comes to a divide sometimes between parents of Autistic kids and the Autistic community. But in my opinion this is more of a communication issue, which I think both sides need to work on.
The battle between parents of Autistic children and Autistics is often present on social media. Autistic adults have often been raised in an ableist households where natural coping methods such as stimming are discouraged by parents who don't understand. These autistic adults are now determined that the knowledge is there to be shared -- to other Autistics, that this self expression is ok, and to parents, not to repress it.
Parents however, are often worried about their kids, comparing them to others, looking for answers. Life can be hard, more complicated and no one can deny that. Therapies, services, schooling often very hard to source and a constant battle to get right. This must be harder at times when your child has more complex and profound needs. The medical model of autism is often presented by professionals who sometimes make it worse by suggesting a bleak outlook.
Therapists may have 'given up' or be targeted more towards medical help than therapy. Sometimes even medical help is refused due to every health issue being branded as being part of "Autism". This scary presumption leads parents even more into the medical model of autism, rather than different neurology.
Autistics online often get misinterpreted as being "high functioning" by parents as they are able to hold a discussion. However the reader may not know that the Autistic may have had sensory overload that day, not left the house for 3 days, needs AAC to communicate, is incontinent, can't tie their shoelaces, may need 24 hour care. However it's not the Autistic person's obligation to disclose any of that private information.
This mutual misunderstanding can be problematic.
So according to one side Autism is a disease that needs a cure and to the other its a way of being. The skeptics of The Neurodiversity Movement often claim that proud Autistics are problematic as they are getting in the way of finding a cure.
For a proud Autistic the mention of cure talk is insulting and ableist. Why wouldn't it be? Everyone has the right to be proud of their identity. Critics argue that the health difficulties of Autism are being ignored here. But Autism doesn't always come with health issues, health issues can vary and because not every autistic person has these health issues, they are generally seen as being 'co morbid'. The medical profession acknowledges this too, and every respectful doctor working on Autistic issues, call them "co morbid conditions".
The concern about charities working on Autism treatments isn't about the research into co morbid conditions, but the 'curitive narritive' that these organisations and charities advertise. They give parents false hope and push them away from acceptance and seeking useful, practical advice.
The fact is, many Autistic people simply aren't looking for a cure. This is proven in a recent survey
Autistic Not Weird Survey /.
Note - this was the results from non verbal Autistics, and ones with a learning difficulty (although I do accept a degree of cognitive ability would need to be present with the second question)
So is supporting The Neurodiversity Movement about ignoring medical issues that might also be present with Autism?
Of course not. Autistic Advocates often talk about the frustrations of co morbid conditions and ask for research into healing or curing them. Agony Autie is one advocate who often talks of her desire to be free from Ehlers Danlos syndrome. It is a common topic in many Autistic groups.
Tania Melnyczuk is part of a team in South Africa working with medical experts on helping Autistics with problematic co morbids and writes about it in this blog imagine-money-wasted-in-autism-research
Which leads me on to the next question. Is the Neurodiversity movement supportive towards those who are non verbal?
According to this person it isn't
So lets disprove them:
Firstly here is a host of blogs written by non verbal and "severely Autistic" advocates or their families -
Frank mentions a lot of names here -
Frank Ludwig - Low Functioning Autism
Not too trapped in my head anymore
How this non verbal man found his voice
A diary of a mom
So many who have found communication through alternative means.
Also, Check out #Istandwithnonspeakers on twitter. A whole host of Autistic Advocates determined to help with the rights of other Autistics.
If you have been told your child has an intellectual disability, its very important to be open minded about their abilities. They may still enjoy differing activities from the norm as an adult, and not achieve high educationally, but there are many other ways to see intelligence.
Mental aged theory is wrong and offensive. An adult is never like a 5 year old child. Read this blog and watch this fantastic video. Don't dismiss their voices, due to perceived assumptions
mental age theory hurts people with intellectual disabilities/
Ivanova - mental aged theory
In some situations though we must accept that direct advocacy work must be done by the parent or carer on the individual's behalf. This is often the type of parent who would be seeking a cure, and who is vulnerable to anti-neurodiversity activists.
They attract a profitable business for anti vaccine propaganda, fooling parents with their false cures, ABA therapists, as the service user cannot express dislike, but also well meaning science researchers too, who focus on more on the profoundly disabled as they fail to see a connection with other Autistic people. There is no denying life may present further challenges, however to cure the Autism would not take away the cognitive delay.
Lets look at some Autistic led organisations. ASAN works tirelessly for the rights of people with all disabilities. If you look at the link here, ASAN Annual report they are fighting here for parents with learning difficulties to have the right to be a parent themselves, with support and also fighting for the right for non verbal autistics to have access to AAC. This is an Autistic led organisation fighting for the rights and justice for all. They are also adamantly supportive of the Neurodiversity movement.
An Independant Guide to Quality Care for Autistic People /
This was another venture run by an Autistic run charity trying to speak up for the victims of abuse in this care home, for residents with profound disabilities. These are all organisations dedicated to the welfare of ALL Autistic people.
Neurodiversity activists are also trying to get this issues political by starting this cause LPANDmanifesto/. Again criticised by anti neurodiversity campaigners. Janine Booth writes a blog here about how incorrect their criticism is -
positive policies not pathologising patronisation.
The Neurodiversity Movement supports the welfare, protection and rights of ALL Autistic people.
Just imagine a world where your child growing up goes in a residential care unit, or requires support in the community which may be needed, now imagine autistic adults working with your adult child. That unique ability to figure out why a sensory trigger might be near, when your loved one needs peace and quiet, routine, why a food might not be appropriate, how they can possibly avoid a meltdown. Admittedly, not all Autistic adults will be able to do this, but some will, and they are essential. Do you think this would have happened if the staff had been autistic? Autism Charity accused of hiding abuse at care home we think not.
Imagine your child's special needs school getting a visit from someone who can spot what could be upsetting or triggering to your children. Do u think this would have happened if the staff had a proper training? Autistic Students Abused by Teachers we think not.
Imagine having an autistic mentor helping you at home to figure out behaviour you don't understand. Not an ABA therapist who doesn't know the Autistic experience.
That is the dream of neurodiversity, not to create a divide, but to create a connection.
Now can I let you into a little secret? This is what many Autistics do already, helping families, helping schools, helping families, whether online or directly it is happening. In advocacy issues too like claiming for disability allowance. Its happening everywhere, most often voluntarily, which to be honest they should be paid for.
The Neurodiversity Movement can't take away the work load or stress which may go with having a family member very high needs. But they can help in working towards making family life easier by having a good understanding of unknown or challenging behaviour. They can help with barriers in an educational setting. They can help with the core understanding of co morbid conditions and researching relief. They can't take away the reality that your loved one may need a residential placement, or assistance in the community, but they can help ensure that any placement or service is safe and happy. They will fight for correct, nuturing therapy for your loved one, and seek appropriate communication needs along with speech therapists and OT's. They can help you fight for your loved ones financial needs, autonomy and human rights.
For loved ones who do understand their diagnosis they can encourage self worth, pride, company, self advocacy, and friendship.
The Neurodiversity community is on your side and don't let any salesmen tell you otherwise. The Neurodiversity Movement is a threat to neurotypical led businesses who have profitted on Autism for years. Lets help turn that around .🙂
It may take your head a while to get around all these concepts, and that is ok. In the mean time, read these testimonials, and click on the links to connect with Autistic Adults .🙂
Useful links and testimonials of how Autistics have helped families