Search for:
Nov 23 2023
Is there an autism epidemic?

One of the issues that autistic people face is the idea that autism is an “epidemic” occurring at higher and higher rates as time moves forward. While it is true that the number of diagnostic referrals (and diagnoses themselves) is increasing quite dramatically, the idea that autism is an epidemic is incredible harmful. It highlights the societal belied that autism is some kind of disease that poses a threat rather than being a natural variation in the human brain. In this article I hope to answer the question as to whether this is a fair analysis.

Genetic factors for autism

To understand the genetic factors around autism, I first bring to your attention studies conducted on twins. Frazier et al (2014) looked at heritability and environmental factors surrounding Autistic twins. They found that monozygotic (identical) twins were likely to both be Autistic, twice as like as dizygotic (non-identical) twins. This suggests that there is a strong genetic factor in the emergence of autism rather than environmental factors taking precedence. To summarise, it is likely that autism is inherited genetically rather than being something triggered by variable in the external environment.

What are the heritability rates for autism?

To consider the likelihood of autism being inherited, I considered another twin study by Tick et al (2016). This study found extremely high heritability, with their estimates being 64%-91%. Supporting this is Sandin et al (2017) which found a heritability rate of 84%. To consider this is simple terms, it is extremely likely for autistic parents to have autistic children. In fact, most of the children birthed by Autistic parents will themselves be Autistic.

How many Autistic people are there in the UK?

I recently wrote an article that cited studies finding that there were over 450,000 diagnosed Autistic people in the UK. This research went on to estimate that there could be as many as 1.197 million undiagnosed Autistic people in the UK. Taking both of those figures into account, we can infer that there are around 1.5 million Autistic people living in the UK, both diagnosed and undiagnosed. There is limited data around how many Autistic people are having children, but the existence of charities such as Autistic Parents UK implies that this is a significant aspect of Autistic experience. In the absence of better data, I will assume that Autistic people are having children at roughly the same rate as non-Autistic people.

What is the average number of children per family in the UK?

This website suggests that on average there are 1.74 children per family, with the Office for National Statistics finding that 42% of families have one or more dependent children, equating to some 8.2 million families. Suggesting that in the UK there are around 14.268 million children in the UK. With the ONS finding that there are 19.4 million families in the UK, and knowing that the statistics here only look at dependent children, the 1.74 figure can be inferred to be relatively accurate.

Concluding thoughts

Autism is increasing because Autistic people are reproducing. Even if only half of 1.5 million(ish) Autistic people in the UK had children, on average that would produce almost another 1.3 million Autistic people if the heritability rates are accurate. I believe that the way towards tackling the “epidemic” argument and removing stigma from Autistic lives is to do robust research into Autistic families. We are not a disease or an epidemic, we are humans. Like any other human, many of us will go on to have families of varying sizes. Given this, we can not be surprised that the number of Autistic people is increasing. It’s time the world caught up with us and supported us, rather than empower the people who seek to eradicate us.

David Gray-Hammond 0 Comments
Nov 14 2023
CAMHS Crisis: An Autistic parent speaks out

Since this campaign to change the way that CAMHS (Child and Adolescent Mental Health Services) treats Autistic children and young people started, I have been blown away by the bravery and commitment to making a difference I have seen. Hundreds of thousands of you have come forward with your own stories, laying bare that which makes you vulnerable. I feel as though we are drawing a line in the sand; this year of 2023 is the year where we no longer accept statutory services threatening the wellbeing and lives of our Autistic children and young people. In line with this, an Autistic parent has very courageously come forward to tell me their story of CAMHS failing their child. Please note that the quotes have been anonymised in order to protect the identity of the family.

Autistic young people need services like CAMHS

I have written extensively about the relationship between being Autistic and having mental health concerns. Much like all of these stories of CAMHS, it starts with a young person in crisis.

“My daughter had a major depressive episode for approximately 2 years when she was 14/15, we now know this was autistic burnout.

Young person’s parent

Autistic burnout and mental health are intrinsically linked. If you have read the writing on this website around atypical burnout, you will have some idea of the diverse ways in which burnout can impact us and our behaviour. Despite this, Autistic burnout is still to enter into mainstream knowledge within services that work around mental health. This despite the growing body of research on the topic such as Raymaker et al (2020).

Accident and Emergency departments are ill-equipped to cope with mental health and neurodivergence

“Everytime she wanted to take her own life we were referred to A&E where we would go and then wait up to 48 hours for someone from the CAMHS team to come and assess.

This happened several times. I myself was coming out of an autistic burnout and was in no fit state to fight and battle, i knew nothing about being autistic at the time.”

Young person’s parent

One of the big issues with referring an Autistic young person to a hospital is the communication and empathy divide. Most will have heard of this as “the double empathy problem”, but healthcare in particular offers additional barriers, creating what Shaw et al (2023) refer to as “the triple empathy problem”. This represents the fact that not only is there an issue with Autistic to non-Autistic communication and empathy, but also medical professional to non-medical professional communication and empathy.

To consider it another way, hospitals should not be assumed to be the right environment for an Autistic young person who is experiencing suicidality. CAMHS and other mental health services use this as a stop gap, usually before gatekeeping the young person out of services.

Autistic young people often end up in psychiatric inpatient units

Unsurprisingly, the fallout of CAMHS failing to appropriately support Autistic young people is that a great number of them will end up being sectioned and detained under the Mental Health Act. Detention of Autistic people has been a point of contention between Autistic people and the government; this contention has been further amplified by the recent ditching of reforms to the Mental Health Act.

“It was decided the best place for my daughter was an adolescent hospital in Cranbrook, Kent

I thought she would be there for a couple of weeks but she got a lot worse, self harmed, escaped which got her sectioned and was there in total for 6 months.”

Young person’s parent

Unfortunately, it is not unusual for voluntary admissions to turn into involuntary detention. I would also note as an Autistic person who has been an inpatient that wards often have a supply of contraband as well as being incredibly triggering environments. Self-harm and escape attempts can become a self-fulfilling prophecy. I personally was threatened with the police if I attempted to leave. Much of this would be unnecessary if CAMHS treated Autistic people equitably.

CAMHS and crisis teams

Anyone who has had a mental health crisis and attempted to access support will probably be familiar with crisis teams. In England they are often called Crisis Resolution Home Treatment Teams (CRHTT). They again stand as a barrier between the young person and long-term support from CAMHS. I am aware of many people who have been discharged from the care of CRHTT’s to manage on their own.

“A crisis team visited for a week after to check we were okay. Sent for DBT [Dialectical Behaviour Therapy] therapy (didn’t work), and signed off with antidepressants.”

Young person’s parent

DBT much like CBT and other NHS therapies is only as useful as the therapist and the therapeutic relationship. CAMHS have neither the resources nor staff to give young people a choice of therapists, and as such, if you get a bad one, you’re stuck with them or labelled as “not engaging”. I would also note the generic addition of antidepressants. While they have their place, they are not a solution for Autistic burnout, and if CAMHS knew anything about Autistic experience, they wouldn’t use them as a go to treatment.

CAMHS and the invalidation of Autistic experience

If you’re undiagnosed at the time of accessing CAMHS, you will find that you are constantly invalidated. Everything is an illness, everything is part of your illness. They will convince you that your experience isn’t real. and that there is no better support out there.

“CAMHS involved lots of waiting, gaslighting, not believing, not listening, accusations of bad parenting. If they had listened my child wouldn’t have been admitted to a psychiatric unit. She would have been diagnosed as autistic.

All the wrong support was given.”

Young person’s parent

I would particularly note the mention of bad parenting here. Autistic and otherwise disabled parents are much more likely to fall victim to what Clements & Aiello (2021). This can go as far as accusations of fabricated or induced illness (FII). Parents are being used as the scapegoats for underresourced and incompetent services.

CAMHS wont help Autistic young people

Text reads "CAMHS should not be turning away Autistic children"

“From a different perspective, if she was initially diagnosed as being autistic then she wouldn’t have received any support at all and turned away!”

Young person’s parent

If this campaign over the current CAMHS crisis has bought anything to light, it’s the fact that hundreds of thousands of Autistic young people are being turned away from support for no other reason than their neurodivergence. If CAMHS are not equipped to support them, it is time they became equipped. Refusal to support marginalised groups is complicity in their oppression and deaths. Our children deserve so much better.

What can you do to support the CAMHS crisis campaign?

Sign this petition
Sign this open letter

Get the latest on the CAMHS Crisis

We don’t spam! Read more in our [link]privacy policy[/link]

Supporting your Autistic loved one

Here you will find a collection of information about supporting your Autistic loved ones and the barriers that you may face as a parent, child, or adult. Below are a growing collection of articles and resources. More will be added to this over time. For information on some of the basic knowledge around neurodiversity, try…

Neurodiversity: The Basics

Within the Autistic community, much of the basic theory that exists within neurodiversity studies is taken for granted. For newcomers, it can feel very overwhelming to understand as this body of ideas has been growing for decades. This page aims to take some of the core ideas and explain them to newcomers. What is neurodiversity?…

David Gray-Hammond 0 Comments
Aug 10 2023
“How do I help my Autistic child?”

I have recently found myself being asked quite often about how parents can help their Autistic children. It sounds like a simple question, but as with most things in parenting, there is no simple, one-size-fits-all approach to parenting. I can, however, tell you what helps me support your Autistic child in my day-to-day professional life.

Monotropism

This has become the theoretical lens through which most of my work functions. Part of my day job is working to support Autistic young people, many of whom are quite traumatised by the wider world, in particular the mainstream education setting. So, what’s the deal with monotropism?

Monotropism as a theory works to explain a great deal of Autistic experience. Through understanding monotropism, I have come to understand a great deal. One of the main ways this influences my work is that it directs me to use gradual transitions between tasks and to know that abruptly changing activities is cognitively traumatic.

For people who want to know more about monotropism, I highly recommend reading the following articles.

If you engage better with video content, try this one

Monotropism 101

The Double Empathy Problem

Autistic children experience a great deal of communication invalidation, and this contributes to the clustered injustice that befalls so many Autistic people. Essentially, Autistic people are told that their communication style is a deficit, a flaw to be erased. We have to recognise and validate the communication of Autistic children if we want to be a part of their world.

In terms of reading, I really recommend A mismatch of salience By Damian Milton. For our video lovers, I have this offering-

The weaponisation of Autistic communication

Burnout and energy accounting

This is a big one. Autistic people living beyond the limits of their cognitive resources for extended periods of time can and will experience Autistic burnout. Burnout can cause a great deal of complications for the Autistic child. We have to work with them to make sure they have the resources they need to cope with the demands in their life (and yes, Autistic children have a lot of demands in their life).

Essential reading for this topic-

And of course I have a video for you-

Atypical Burnout

Interoception

Believe it or not, there are not five senses. There are eight. They are visual, tactile, gustatory, olfactory, audio, vestibular, proprioception, and interoception. While having a good knowledge of Autistic experiences of all of these will help you, interoception is a big one. Interoception is the sense that tells you what is happening in your body. Whether you need the toilet, are hungry, or feeling anxiety, all of this is informed by your interoceptive sense.

When working with an Autistic child, I have to remember that sensory differences mean that they may be alexithymic, preventing them from answering questions about their emotional state.

Reading around this topic that is important follows-

Masking

Masking is perhaps one of the most commonly misunderstood aspects of Autistic experience. It’s best understood by considering it a projection of acceptability; we show people what we think they want to see. This is why your Autistic child might be fine at school and then completely meltdown at home. We have to be aware that Autistic children often don’t feel safe fully expressing themselves.

Anyone wanting to know more about masking should read the following-

And here is a video!

Autistic Masking in my experience

These are all essential foundations that come together to create the competency that people need to start to start understanding the individual experiences of Autistic people. Remember, you won’t get it right every time. You won’t learn everything overnight. What matters is that you spend time in and around Autistic community and culture. Nothing will teach you better how to support your Autistic child better than Autistic adults.

Katie Munday and I are currently co-authoring a blog series together that looks at the experience of being an Autsitic parent. Find it here.

If you want to learn more about the challenges that Autistic people and their families face, check out the Creating Autistic Suffering series I co-author with Tanya Adkin. Find it here.

Don’t forget to check out my books here!

David Gray-Hammond 0 Comments
Mar 20 2023
Post-normal childhoods: Neuroqueering education and play

Neuroqueer theory is often discussed in the context of neurodivergent adults. While a helpful tool in the liberation of Neurodivergent people, constraining it to just this section of society limits its potential. Neuroqueer theory, at its root, is a theory that intends to liberate all people rather than just the select few. It does this by teaching us the malleable nature of identity, culture, and the Self.

I personally I have discussed my idea of the Chaotic Self; a Self that is ever shifting and changing. The Self emerges and re-emerges from itself as a factor of our experiences and relationships with the environment and those within it. As we acquire new ways of rationalising and contextualising those experiences, we also learn new ways to subvert our own meanings and understandings, allowing us to fundamentally queer our very existence.

So, how does this apply to childhood education and play?

Current “traditional” education and play is built upon normative standards. Those who provided the knowledge it is built on were unaware of their privilege and acted to uphold systemic oppression, regardless of whether they intended to or not. What we have had in both historical and contemporary contexts is normatively violent and creates a power imbalance between the student and the teacher.

Every aspect of our growth and development is regulated and controlled through the milestones we are supposed to achieve, the times we are expected to achieve them, and the curriculum that a given authority feels is necessary to learn.

The issue with this approach is that it expects all children to adhere to these standards. If one can not achieve under normative standards, we are deemed to be disordered and troubled. We find ourselves undergoing behavioural intervention and medicated treatments in order to achieve what is important to others rather than ourselves.

So, how do we move beyond this cult of normality? Can one be an apostate of normality and still achieve great things? I propose that the starting place is simultaneously a thing of beautiful simplicity, with the potential for profound complexity. We encourage children to experiment with language.

Language defines every aspect of our understanding of the Self. Words we acquire from others move forward to become the words we apply to ourselves. The first thing we must do is gift children language. All language. Access to language is essential to our relationship with ourselves. We then must consider how a child might be empowered to explore and experiment with that language.

Children should not be taught to use descriptive language based on someone else’s view of them. We should allow them to identify themselves in whatever way they please. This can be done as a form of play, and as such, it is a vital part of our development.

Once a child is comfortable with playing through language, we can begin to work with them to consider how they can subvert and reimagine the meaning of language. Once a child is free of objective definition and allowed access to the fluid nature of subjective meaning, they have an infinite number of ways to engage with their Self. It sounds deceptively simple, but the effect of truly unlocking language to a child could be immeasurably life changing.

It teaches us the importance of what we say to children.

This is but one way of applying neurofuturism to childhood, or perhaps more accurately, post-normalism. If we are ever to live in a neurocosmopolitan world, we must explore the ways in which we raise children, and consider them helpfulness of standardising and regulating their development.

In the meantime, let children play with their language and identity. You might be impressed by the way they explore themselves, and it might even teach you a thing or two as well.

David Gray-Hammond 3 Comments
Verified by MonsterInsights