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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
Jul 28 2023
Autistic Parenting: Supporting our Autistic children’s mental health when services won’t

This article was co-authored by David Gray-Hammond and Katie Munday

There is an ongoing crisis in services such as Child and Adolescent Mental Health Services (CAMHS) when it comes to Autistic young people’s mental health. Failing to support our Autistic young people can have a big impact on our wellbeing as parents as we watch our children go through the same systemic discrimination that we have often experienced ourselves.

Support for the child means support for the whole family

Seeing the invalidation and gaslighting that can take place when approaching CAMHS can lead to trauma responses in ourselves. Importantly, appropriate mental health support will provide support to the whole family. Family members of traumatised Autistic young people can experience their own trauma by witnessing what has been conceptualised as “challenging behaviours” (Munday, 2023; Gray-Hammond, 2023). Witnessing self-injurious behaviours can be a particularly upsetting experience, especially when these behaviours are used against families when they reach out for support. The medical model centres “problems” within the child rather than in the systems which fail to support them.

Failures by CAMHS to support Autistic young people can create an environment that has the potential to traumatise the entire family unit; not just the young person. Stewart et al (2017) indicated that PTSD may be more prevalent amongst parents of Autistic young people, who are less likely to approach services for support with their own mental health. Unfortunately, such research ignores the possibility of parents being Autistic and having their own previous trauma (Gray-Hammond & Adkin, 2021). Again, the blame unfairly sits with the Autistic young person who must take responsibility not only for their own mental health but that of their family members.

Institutionalised Parent/Carer Blame

Institutionalised parent/carer blame is a significant issue for Autistic parents (Clements & Aiello, 2021) with some going as far as experiencing accusations of Fabricated or Induced Illness (Gray-Hammond & Adkin, 2022). CAMHS have been known to refer families to safeguarding instead of providing support with mental health. Another approach is to send parents on parenting courses such as the Cygnet Parenting Program from Barnardos. In these cases, it is clear that a child’s mental health concerns are being blamed upon parenting styles as opposed to environmental issues. Saying nothing of the deficit based ideologies which underpin these programmes.

Parent/carer blame can be a significant source of trauma that may deter families from approaching services again in the future. CAMHS and other services are creating a hostile environment that excludes Autistic young people in more ways than simply refusing to see them. There is also an inherent misogyny in parent/carer blame with mothers taking the most accusations since the days of Bettelheim. There is also a great deal of invalidation from service providers for Autistic parents who are seen to be projecting their own issues onto their children.

Minority-stress is amplified by CAMHS failure to support Autistic young people

Minority-stress can be understood as the collective pressure of multiple areas of discrimination and ostracisation. This can include things such as discrimination in the healthcare setting (Botha, 2020). Stigma is also a major contributor to minority-stress (Botha & Frost, 2018), of which there is a plentiful supply within services such as CAMHS. This stigma affects not only the young person, but also their parents.

“Minority stressors such as victimization and discrimination, everyday discrimination, expectation of rejection, outness, internalized stigma, and physical concealment of autism consistently predicted diminished well-being and heightened psychological distress”

Botha & Frost, 2018

It has also been suggested that everyday discrimination goes hand-in-hand with an expectation of rejection (Botha & Frost, 2018) which can itself make accessing services like CAMHS incredibly triggering for Autistic parents.

In conclusion

Parenting an Autistic child who is experiencing distress due to their mental health is a traumatic experience. To be clear, this is not because of the child themselves, but because services like CAMHS are inherently hostile towards Autistic people and our families. Reaching out for support can cause more trauma, effectively isolating already marginalised families. The very services which are meant to support us often do us more harm. It is clear that CAMHS has a long way to go in order to support Autistic children and young people, and their families.

Click here to sign the CAMHS petition.

Check out this seminar (free to Autistic parents) on burnout by David and Tanya.

Find more information about CAMHS here.

References

Barnardos Parenting: Cygnet Parenting Program. https://barnardos-parenting.org.uk/

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Botha, M., & Frost, D. (2018). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 10 (1).

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Gray-Hammond, D (2023) Challenging Behaviour: The weaponisation of Autistic experience. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. https://emergentdivergence.com

Munday, K. (2023) The truth about “challenging behaviour”. https://autisticltd.co.uk

Stewart, M., McGillivray, J.A., Forbes, D., & Austin, D.W. (2017). Parenting a child with autism spectrum disorder: a review of parent mental health and its relationships to trauma-based conceptualisation. Advances in Mental Health, 15 (1), 4-14.

David Gray-Hammond 0 Comments
Jun 2 2023
Autistic Parenting: Parenthood in it’s infancy

This article was co-authored by David Gray-Hammond and Katie Munday

When Katie and I set out to write today, we knew we wanted to do something new. While there has been a great deal of discussion around parenting school-age Autistic children, Katie and I are both parents to younger children and feel that there is somewhat of a void in discussions around the early years or parenting an infant.

We do not position ourselves as experts, this is more of a journey into our own discoveries, the experiences we have, and sharing in the joys and struggles that so many Autistic people experience as they grow into parenthood.

“Nothing quite prepares you for parenthood, no matter how organised you are and how much the baby was planned.

The late nights, the interrupted sleep, the constant feeding and nappy changing, and the emotions of it all!”

Munday (2022)

Being Autistic and a parent is a unique and wonderful challenge. It represents a leap into unknown territory, and requires us to ask the question of how we would like to have been parented.

What is it like to parent an infant as an Autistic person?

At times being a parent can feel very surreal. There can be a disconnect between the reality of your child’s existence, and the realisation that you have created that child. Many people speak of having an instant bond with their child, but for many of us it can take time to feel that deeper connection. This doesn’t make us bad parents, it makes us human beings who are processing the reality that we are personally responsible for another living being.

Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesn’t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021).

Besides the somewhat philosophical musings of love for your child, there are some technical challenges to being an Autistic parent to an infant.

“He’s just started the ‘terrible twos’ stage – awful name but you get what I mean – and he finds it hard when Daddy leaves for work. So, he throws himself down and makes these noises which prod and poke at my very soul.”

Munday (2022)

Sensory challenges are everywhere as an Autistic parent, there are noises, smells, and for some reason babies are permanently sticky. Where the hell does the stickiness come from? David in particular struggles with sticky things, it is a sensory challenge that turns his stomach. For David, stickiness can remain for days causing him to pick at his skin and repeatedly wash his hands. This is unsurprising given the intersection of OCD with Autistic experience (which David and Katie both share, more on this intersection here and here).

Nappy changes can also be quite upsetting for Autistic parents, issues around cleanliness, olfactory senses, and children who perhaps try to escape during nappy changes can result in a very overwhelming experience. The nappy changing experience can be increasingly exhausting, especially as infants reach an age where they can begin to move around. It is easy to be hard on yourself for being overwhelmed, particularly in a context where you have to “be the calm”.

On the topic of “being the calm”, it can be frustrating trying to demonstrate emotional regulation when it is not something you excel at yourself. Autistic parenting can leave you constantly dysregulated meaning that often you have to mask your struggles for the sake of your children. While neurotypical parents may also deal with this, we have to acknowledge the monotropic split (Adkin, 2022) that can arise from doing this constantly as an Autistic person.

There are a lot of aspects of parenting an infant we could discuss, but in order to give them the space they deserve, we will address them each in separate installments of this series. In the mean time, just be safe in the knowledge that Autistic parents everywhere have different strengths and struggles, and like many things, there is no one-size-fits-all approach to being a parent/carer.

David Gray-Hammond 0 Comments
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