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Five things I want parents of neurodivergent children to know

It can be very difficult to wrap your head around neurodiversity when you have spent your life being taught that any deviation from the status quo is a disorder. It’s all the more overwhelming when your child is discovered to be neurodivergent, and suddenly, you live on a battlefield between advocates and professionals. In this post, I hope to give you a starting point with five things that are important to know in your attempt to affirm your neurodivergent child rather than force them into what the world tell you they should be.

1. Person-first language versus Identity-first language

This has been a point of contention for as long as the neurodiversity movement has existed. Broadly speaking, the Neurodivergent community (in particular, the Autistic community) prefers identity-first language. Identity-First language requires us to stop viewing neurodivergence as an illness or disorder and instead view it as an identity.

Instead of person-first language (person with autism/ADHD), try using identity-first language (Autistic person/ADHD’er). As a community, we prefer it because our neurodivergence is inseparable from us and fundamentally; we don’t need to be reminded of our personhood. There are wider discussions around cure culture and normativity, but the information here is a good basis to start learning from.

2. Familiarise yourself with the social model of disability

Discussion of appropriate models of disability can get complicated, so I will try and explain this simply. Autism (as an abstract concept) classes as a disability. There has been a great deal of discussion around whether disability is centred in the person (the medical model) or the environment (the social model). For the purposes of starting to understand disability in the context of neurodiversity, you will need to rethink your conceptualisation of disability.

For the most part, disability arises in neurodivergent people because society and the environments it provides are inaccessible. Rather than considering your child to be disabled due to deficits, start to consider that the issue is oppression. It sounds extreme, but due to the neuronormative attitudes of society, we are held back until we can conform to perceived cultural norms.

This is largely where functioning labels arise from. The idea that people are more or less disabled comes from normative thinking, as does the medical model of disability. Speaking of which…

3. Functioning labels give you very little useful information

You have probably heard of people being labelled as high or low functioning. This is a falsehood. Primarily, disability from neurodivergence has a tendency to be dynamic. A person’s functioning depends on so many variables that different times, environments, and states of health will alter a person’s functioning.

Something else to consider is that those labelled low-functioning are considered so because they do not fit the stereotype of a person who will ever be able to contribute to society. Therefore, they are denied agency. Conversely, those labelled high-functioning are considered valuable to society despite their quirkiness and, for this reason, are often denied resources.

Ones access to humanity and support is often dictated by the functioning label you are assigned.

4. Neurodiversity covers more than autism and ADHD

Neurodiversity refers to all brains, including those considered neurotypical. Neurodivergent people are those who are not neurotypical. For more about terms and definitions I recommend this article by Nick Walker.

People who are not neurotypical also includes those with what is traditionally considered mental “illness”. It also includes things such as Down Syndrome and epilepsy. In particular, I would like you to think about how mental health has been pathologised and how we might move forward to a more inclusive society.

Onto my final point.

5. Almost anything can be traumatic

You may have heard about the high rates of trauma amongst the Autistic and otherwise Neurodivergent community. Our understanding of trauma has been heavily influenced by normative attitudes. The truth is that a wide range of things can traumatise your child.

It’s probably not reasonable to expect yourself to protect your child from every trauma, but having a trauma-informed perspective will help your child-parent relationship a lot.

I hope that this gives you some food for thought and helps you feel as though you can start your journey of learning. Remember, it’s okay to be scared, and it’s okay to make the odd mistake. Allow yourself space to admit your shortcomings, and always consider asking neurodivergent adults about things that helped then as children.

Neurodivergence is not just for childhood.

If you have found this helpful and would like to read something a bit more in-depth about normativity and its impact on neurodivergent people, please consider purchasing my book The New Normal: Autistic musings on the threat of a broken society

For further reading on my website, please check out the Creating Autistic Suffering series that I co-author with Tanya Adkin and the Neuroqueer series that I author with Katie Munday.

An open letter to parents of Autistic children regarding Spectrum 10k

Spectrum 10k, what is it?

Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.

This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.

S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.

Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.

What happens next?

You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.

Here’s what our kids need.

They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.

Simply put, autism + environment = outcome.

The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.

Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.

Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.

“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”

Simon Baron-Cohen (S10k project leader) [Source]

This means, that this research, could possibly be used to prevent the birth of Autistic babies.

Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.

There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.

10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.

So this means, they are either being very arrogant, or they are lying.

How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?

The answer, very clearly, is it won’t.

So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.

Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.

Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.

It gets worse.

When speaking at a UCLA symposium in 2018;

“If we know the mechanism, then we can prevent it. Cure the autism”

Daniel Geschwind [Source]

They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.

Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.

And that is why we suggest #BoycottSpectrum10k.

This letter was a collective effort from the team at #BoycottSpectrum10k

For more information on this campaign, please follow our social media on Twitter, Facebook, Instagram, and TikTok.

To read our full joint statement and sign, please visit here.

For another article about the concerns of the Autistic community, click here.

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