Why reports of a 'cure' for autism makes me want to cry

An observational veiwpoint

I look back on my research into the wellbeing of adults with autism as one of the most life changing periods of my life.

The people who were my participants were as unique in their heterogeneity as they were in their neurodiversity.

These people were all, or were not, stereotpypes of autism. They were all, or were not, active participants within the neurotypical nightmare life that we have constructed. There were all, or were not, glad of their diagnosis.

The one thing they were all not is as well as they possibly could be.

Wellbeing is so important to the human condition.

It is not about smelly candles, fancy crystals, or, jewellery to ward off bad spirits.

It is about the quality of life and how supported we are to be well in an ever increasing toxic environment.

People with autism die on average 15-20 years before neurotypicals.

Let that sink in.

They die sooner than those without atypicalites within the brain.

They just burn out from exposure to the neurotypical world. That is their experience.

This is an absolute outrage and disgrace.

I developed the world’s first theory of wellbeing for adults. You won’t find this within the NHS in the UK nor in any framework for care as when I approached the commissioners with my findings they just were not interested.

This is despite the academinc literature saying that the voice of those with autism needed to be heard.

Well I listened and I told the story of what made a difference to people with autism to be well.

The main strands of my theory are the ability to be accepted both by themselves and by their social environment. The ability to place meaning on their existence and purpose in life. All within the backdrop of the environmental conditions. With the ability to be well very much dependent on how toxic (or not) the environment is.

A golden thread that goes throughout all of these domains is a lovely theory that states all things social comparison.

Yes, people with autism are only too aware of their differences in the neurotypical world, and strive to make themselves less noticeable, more useful, more relevant than those without.

I can remember every person I spoke with, every story of their life they told me, how they looked, how they felt, how they cried, how they apologised, how little they felt valued.

It is something so vivid within me and I feel such as sense of responsibility to those who trusted me with their experience.

So.

When I see headlines of a ‘cure’ I feel an immediate visceral reaction.

By using the word cure there is an inference that we need to treat autism as a disease. Something undesirable, something nasty, something contagious.

This is simply not true.

We do not need to cure autism.

We need to make the environment safer, more secure, more nurturing and more accepting.

We need to tell people with autism how amazing they are. How their brains are actually facinating. We need to tell all of them that we neurotypicals are increasingly unwell in the envioronment that we all create. That they are not the problem here.

How we live is the problem.

When I look into the ‘cure’ itself. Well I never. It is not actually a ‘cure’ at all. It is a chemical lamotrigine, brand name Lamictal, which ‘curbs’ behavioural and social problems linked with autism.

They have not researched this in humans not at all, not yet.

The researchers claim (after using the mouse model to investigate) that their drug alleviated brain cell dysfunction and counteracts the behavioural abnormalities in autism.

Well this is extremely interesting as often the behavioural abnormalities that are spoken about within autism are those that make neurotypicals feel uncomfortable. Certainly within the research there is no mention of what behavioural abnormalities the mice were ‘cured’ of.

Something else that is really of interest, and should be noted, is that within my reseach adults with autism spoke about their avoidance of feeling joy as the after effects were so devastating that they actively avoided joyful activities.

I have researched joy prior to my autism studies and I know this much. The emotion of joy underpins both eudaimonic and hedonic wellbeing. It has the chemical influence of oxytocin and it also helps us all to connect with things outside of ourselves in meaningful ways.

Many people with autism do not experience the magic of joy as they cannot deal with not feeling it afterwards.

If you search through the literature you will find many studies that have looked at behavioural interventions for people with autism. These interventions though are how to ‘manage’ emotions such as anger, frustration, meltdowns in general. Things that we tend to not like to see in a neurotypical world.

There are no interventions that support someone with autism to understand positive affect and how important it is in supporting our wellbeing levels, both subjective and objective. This, to me, is a clear sign that we are not embracing the differences of autism, we are seeking purely, to make them less visable within our social circles.

We do not care if you do not feel positive, we want you to manage it if you feel negative.

That is the message that that is sending out.

I do not want to ‘cure’ autism.

I find that thought repugnant.

I want to celebrate autism.

Support those with autism.

Enjoy their differences, celebrate their nuances, marvel at their abilities.

None of us should want to ‘cure’ autism.

We should instead make the environment as autism friendly as possible, as kind as possible, as accepting as possible, as tolerant as possible, as engaging as possible and as supportive as possible.

There are many things that we can do to make the social environment more friendly, less impactful to those with autism. Start today just thinking of what you can do to shift your environment to one of kindness, inclusion and thoughfulness.

And, guess what?

By doing that it will be better for all of us. Not just those with autism.

You have to be the bravest person in the world to go out every day, being yourself when no one likes who you are.