What is Neurodiversity? By Mike Stanton
When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.
I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”
The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.
This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.
What does Neurodiversity mean for parents?
The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.
Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.
Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage – a method of teaching everything in tiny steps.
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism – honesty, uncompetitiveness, absence of spite.
Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,
Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”
Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,
an autistic child can only be helped if a serious attempt is made to see the world from his point of view.
Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.
I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.
This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.
That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem. You try and offer constructive criticism. They take it as a mortal insult.
If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.
When does Neurodiversity give way to disability?
It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.
There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.
Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.
Who will speak for my child?
This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.
The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members – parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.
I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.
Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.
What does Neurodiversity mean for professionals?
By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.
What does Neurodiversity mean for autistic people?
I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.
My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.
One mother’s story
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Autism Society of America
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For permission to use this article please contact the author Mike Stanton at email@example.com
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Great essay Mike.
I just Googled hoping to find a good explanation of the neurodiversity concept for the NI board, and here it is!
Oh, I recognise that mum’s quote too!
my son has been diagnosed with severe autism and has been recommended by all professionals that funding for a special residential school in Alloa would be of most beneficial. A necessity. Would this be for life?
I do not know. But if you have a severely autistic child in a specialist residential school these are some possible scenarios.
1. He benefits immensely from the specialist service and either comes back home or gets to live a semi-independent life in a group home with sheltered employment when he leaves school.
2. He is happy in his special school but will always need a high level of support. In this case, being in a residential school puts him at the front of the queue for adult residential services.
Having your son in residential school puts you ahead of the game and if he improves you always have the option of bringing him back home. For most parents it is the other way round. Their child is in a day school and they have an enormous struggle to get the right adult services if their child needs residential provision or supported living in later life.
Excellent essay, Mike.
One more reason that it is a mistake for family of severely handicapped autistic kids (and adults!) to dismiss the concerns of autistic self-advocates and their pro-neurodiversity allies as irrelevant to their own family’s situation is that the probability is ever increasing that over time, with advances in educational, counseling, and medical approaches to the handicaps concomitant with autism, their family member’s outcome will improve to the point where those concerns begin to become more and more urgent. The sooner they get on the right side of those struggles — as allies of autistic self-advocates — the better equipped they will be to deal with those concerns as they impact their family member’s life and their own lives to a greater and greater extent.
Opposition between the interests of family members of significantly or severely handicapped autistic kids and adults, and those of autistic self-advocates, is misbegotten and based on false assumptions.
I do love your angle on how in reality it isnt the “autistic” that are socially deficient it is in fact , the large percentage of society, that are deficient of understanding those that are deemed “autistic” …..
my own experience is quite a travesty, in that professionals lack of training/understanding of aspergers and other disorders coupled with the local authorities lack of educational provision and strategies. Has catapulted my family into a world of child protection, unnecessary negative intervention, blatant denial of my sons diagnosis and the extremely traumatic route of care proceedings which i am labeled a fabricating mother. Its because of the said actions that we as a family are dysfunctional and very isolated , have been for years unfortunately. My persistent cries for help have, of course, been misconstrued
as attention seeking. We are weary of trying to educate others e.g. The reasons why my son do s x-y and z …..
im sure im not the only one that has been targeted . IT NEEDS TO STOP!!!
HI Mike, thought i would drop by and let you know how i went….
my son had a diagnosis mike, he was quite a mixed bag,i say had because the consultant was outnumbered by opposing expert witnesses that preferred to think it was me….
only trouble is non of them had any speciality in asd s , however the specialist had to save his reputation, especially in light of a fraudian psychiatrists view that perhaps i had projected my anxiety onto my son.
Now i face even more unnecessary intervention, they plan to integrate my son into a foster family, and if at any time my son do s not comply with their plans they state they will simply come to my home and forcibly remove him.
Never have i known such blatent ignorance, was i allowed to fight my corner ? no…. Was i allowed to question the experts about their extremely flawed reports?.no…. Was i guilty before being proven innocent ? Indeed i was….
The judge in all of his wisdom granted an interim care order, i came home and cried like a baby.
Every single person , solicitor, barrister, local authority, fostercarer, judge, just didnt have a clue…now let it be documented that what occurs from here on in is child abuse inflicted by the state. I know my son will refuse to comply with there wishes, you know why ? He knows that no where else on the planet will he be loved and understood, the way he is with us….
for them to remove him makes me feel physically sick as i know the trauma that they will inflict , he will carry for life……
hope you dont mind an update, i feel it is of vital importance,
1. To publicise the realities, impact and of course complexities involved in having a child in the family on the spectrum.
2. Making others aware of the ignorance that most certainly exists in within the LEA S , SSD S , GP S , CONSULTANTS AND OF COURSE , SOLICITORS , BARRISTERS , JUDGES, PRETTY MUCH EVERY AVENUE.
3. To warn others that this can happen to anyone, from any walk of life, if they take notice of any of this and apply a little more caution, in effect avoiding such a terrible situation similar to mine then im one happy lady……
I was told on August 8th 2007 That i must do whatever it takes to encourage and persuade my son, to accept and comply to the plans they had , which was to integrate him into a new foster family…..
The social worker stated, that if he at any time refused to comply with their wishes, she would simply leave and come back with the police…..i was warned that i mustnt tell my son this as it would make him anxious and constitute emotional abuse.
i felt so torn as i knew my son was in fact aspergers and had a very stubborn streak which is described as concrete thinking. Once my sons mind is made up , there is no budging him and the fact was he wanted to stay with me….
THE VERY NEXT DAY HE REFUSED TO GO WITH THE FOSTERCARER TO HER HOME…..I PLEADED WITH HIM TO GO, AS I KNEW WHAT THEY HAD THREATENED TO DO…..
BUT EARLIER THAT DAY THE SOCIAL WORKER HAD CALLED OUT TO OUR HOME AND SAW MY SON….
AFTER SHE LEFT MY SON WAS FRUSTRATED AS HE TOLD ME STRAIGHT AWAY THAT HE HAD TOLD HER TWICE HE DIDNT WANT TO GO WITH THE FOSTERCARER BUT SHE TOTALLY IGNORED HIM………
AUGUST 15TH 2007
THE NIGHT THEY TRIED TO REMOVE MY SON
i was all set for a meeting with everyone monday morning. i needed to tell them there methods just werent going to work….my son would never walk of with a person he had never seen before….
mon came sw told me the meeting was cancelled, hadnt a clue why, id worked hard too listing all kinds of suggestions for them….
for the next 2 days they didnt even reply to sol, then wed night a knock at the door,
it was sw with three female police officers, they came into my home with sw and line manager , the social worker said, “you know why we are here dont you miss allen”…our bean ran upstairs and burst into tears…..thats when i lost it…..told them there is no need for this no need for an EPO , he was scared to death…..how could they do this to him…..
i was told to stop getting upset and keep my voice down as i would make him worse…..
i said hang on a minute, you come into my home to forcefully remove my son , hes scared out of his wits and your asking me to keep it down. My son will know im mighty miffed and so i should be….
so there i was with three police in my home two male officers outside , one sw and one manager.
i dont mind admitting i talked my sox off , cried, begged, you name it, as i new the trauma forced removal would inflict on my son..
The police left after about an hour and the ss after another hour……everytime i went to open my mouth the sw kept cutting right across me….i was trying to give them the empirical evidence that was needed to lay this to rest, but just like the way it was in court they had no idea…. IQ lacking i expect as the bad parenting card was played yet again….
i stopped them from enforcing the EPO
now they are trying to befriend my son, he tells them over and over , i dont want to go, want to stay with my mum….its breaking my heart. the advice is that he complys or will have to be removed and be placed in a secure unit , given high doses of tranquilisers over a few days until he comes around to the idea, and accepts his position………
SO THIS IS HOW THIS COUNTRY DEALS WITH OUR CHILDREN WHEN THEY WONT CONFORM TO
THERE RULES……..I FEEL PHYSICALLY SICK….
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