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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 1 Comments
Jul 27 2023
I was an Autistic psychiatric inpatient: Here’s what I would change in the mental health system

Autistic people are exposed to inordinately high rates of trauma and mistreatment. It is unsurprising then that a large portion of us develop mental health struggles. Where there are concerns around mental health, there are also issues regarding inpatient treatment, both voluntary and involuntary, under the UK’s Mental Health Act. There are currently 1,310 Autistic people under inpatient care, with 93% of inpatients under 18 being Autistic (as of this report in June 2023). Inpatient mental health treatment is a significant issue not just because of our mental health, but also because many of us have been forced to remain in such facilities for months, if not years.

Why are there so many Autistic people in psychiatric facilities?

According to a document submitted to parliament. The following is a significant factor:

“The lack of appropriate community mental health care for autistic people means that some reach crisis-point and are admitted to mental health hospitals.”

National Autistic Society, Document submitted to parliament

This is not a new finding. Community mental health services in general for both adults and children are shockingly underfunded, under-resourced, and not skilled in working with Autistic service users. One might look towards the current CAMHS crisis to consider how a lack of accessibility to good quality and timely assessment and treatment in the community can result in a person reaching crisis point.

We also need to consider the lack of social care support from local authorities. Autistic people all over the country are often gatekept out of vital services that they are entitled to due to failure in the social care sector. Long waits for mental health and social care services are potentiating the the journey towards mental health crises.

What was my own experience as an Autistic inpatient?

Psychiatric wards are intimidating places. I spent the first 48 hours under round the clock supervision. Every aspect of my day-to-day life was under the microscope. Something I witnessed regularly and experienced myself, was the use of restraint. For me, this took the form of chemical restraint, being given powerful tranquilisers that kept me quiet and sedentary. Staff would treat me as a nuisance in their workplace, forgetting that I did not want to be there anymore than they wanted me there.

The building was almost prison-like in its design, with doors that could be closed and locked at the touch of a button, and walls with wire fences on top of them. The beds had plastic mattresses with plastic pillows. Sleep was not an issue because of how sedated they kept me. Staff had no idea how to even identify an Autistic patient, let alone good practice for working with them.

Restraint in psychiatric wards

Autistic people are significantly more likely to be the victims of restraint and seclusion. The International Coalition Against Restraint and Seclusion recently published a report into the use of restraint in schools showing just how common this is in non-psychiatric settings. I assure you it is worse on psychiatric wards.

Chemical restraint is very commonly used in this setting, in fact, I would argue that every single one of us on the ward was chemically restrained. The Care Quality Commission found the following:

“The Mental Health Services Dataset published by NHS Digital for August 2021 shows that 2,465 people in a mental health inpatient setting were reported to have been subject to restrictive interventions in the month, and there were 17 restraints per 1,000 occupied bed days.The data also shows that in August 2021, 790 people were subject to chemical restraint. Among these people, chemical restraint was used on average 2.5 times per person”

Care Quality Commission, December 2021

“…providers did not always recognise how distressing the use of restraint and other restrictive practices could be for people. They also did not recognise the long-term impact of being in restrained, secluded or segregated.”

Care Quality Commission, updated March 2022

It is clear that restraint is used too frequently and in dangerous ways, and yet this continues. Despite the Code of Practice calling for use of least restrictive practices, this is an issue that is prevalent for many inpatients.

What does the code of practice say about Autistic people?

The most interesting part of the code of practice is the following:

“Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to find detention in hospital anxiety provoking.”

Mental Health Act (1983) Code of Practice

Given this we have to consider that the concept of least restrictive practice and the code of practice itself are being failed by the lack of adequate community services. Autistic people are being locked away because there are no better options. That should not be a good reason to do such things.

The code of practice also states:

“If a person with a learning disability or autism is detained under the Act, a comprehensive assessment of their needs should be undertaken to ensure that reasonable adjustments required by the Equality Act are made”

Mental Health Act (1983) Code of Practice

In my experience, this requirement is rarely met, with Autistic people often being given the same treatments and approaches as every other inpatient.

What can we change?

First and foremost, we can change the lack of tailored community mental health support. We should be supporting Autistic people with their mental health within their community and following principles for least restrictive practice. If Autistic people had this they would be less likely to be sectioned under the mental health act. In particular I think of the 93% of inpatients under 18 who are Autistic. How many of them were turned away by CAMHS before finding themselves under section?

Staff need to be significantly up-skilled. This means training them in Autistic experience using competent Autistic trainers who can help to contextualise information. Services would be able to better support Autistic people if they understood the nuances and differences in our experiences. Staff who are better prepares are also less likely to resort to the use of restrictive practice.

Parents need better support. Parents of Autistic people are more likely to be socially isolated creating tension in the family environment that can decrease the mental wellbeing of the whole family unit. We must also remember that many Autistic children and young people have Autistic parents and carers.

We need service user involvement models to be implemented in service commissioning. When a service is designed and implemented, it should be mandatory for service users to be involved in the design and implementation of service provision and policy. A service without the input of service users is fundamentally flawed.

Finally, we need improvements to social care provision that would allow for services to implement support that reduces the psychological burden of being Autistic in an environment not designed to support you. Improvements in social care can make a big difference to the psychological wellbeing of Autistic people.

It is clear that Autistic people require a great deal more from the services that currently exist than what is available. The issues above are not an exhaustive list and until such time that issues within the mental health system are addressed, Autistic people will continue to be inappropriately help in inpatient settings.

What can you do now?

Visit the CAMHS Crisis page of this website.

Sign the petition to make CAMHS accept Autistic young people.

Learn about Autistic experience- this seminar on burnout I am giving with Tanya Adkin is free for Autistic Parents.

Share this article and similar articles.

David Gray-Hammond 1 Comments
Jul 26 2023
Why is the Autistic community so important for Autistic people?

Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.

In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?

Community and wellbeing

Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.

Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.

Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.

Minority Stress

Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.

What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.

The Autistic Community

The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.

I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.

This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.

Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.

Our lives depend on it.

David Gray-Hammond 1 Comments
Jul 24 2023
Hyper-empathy, mirror-touch synesthesia, and the Autistic experience of pain

Autism is often conceptualised as a neurocognitive style that leaves a person entirely more concerned with their needs than the needs of others. Autistic people, in particular (when compared to attitudes around non-Autistic people), are often positioned as lacking emotional and cognitive empathy. However, for some Autistic people, their experience of empathy can be so intense that it is almost debilitating. Where this gets interesting is when it instersects with synesthesia, more specifically, mirror-touch synesthesia. Let’s start with some explanations of what we are discussing.

Emotional and cognitive empathy

Cognitive empathy allows us to imagine what another person might be feeling. This is essentially the “what would you feel if you were in their shoes?” question. Emotional empathy then is when we experience another person’s feeling as our own. We feel their feelings with them. This can be a complicated experience for alexithymic people who already struggle to identify and express their emotions.

Hyper-empathy

Hyper-empathy is quite common amongst Autistic people. Unsurprisingly, a Google search will turn up various medicalised and pathologised takes on such a phenomenon. However, this can be understood as experiencing greater levels of empathy than expected.

Synesthesia

Synesthesia is the experience of one’s senses crossing over with each other. One might hear colours or see music. While not unique to Autistic people, synesthesia is significantly more common within out community

Mirror-touch synesthesia

Mirror-touch synesthesia is a specific kind of synesthesia where a person can feel the sensation of another person being touched. For example, if you saw someone be poked in the arm, you may also feel a poke in the arm.

The overlap

As you might imagine, the intersection between the experiences of hyper-empathy and mirror-touch synesthesia can be quite intense. Seeing someone injured themselves can trigger anything from a nervous jolt at the site of the person’s injury, through feelings of every nerve in your body firing or literally feeling their pain. When we consider overestimated states of emotional empathy on top of this, a person could literally go through someone’s else’s traumatic accident as thought it were their own.

This is interesting to consider and has far reaching ramifications for therapists working with traumatised Autistic people(and we experience a lot of trauma!) Not only do we have to manage our own trauma, it’s possible that we have to now process trauma we have witnessed. Given the neuronormative nature of the medical field, this opens us up to a great deal of invalidation and gaslighting with regard to our own experience.

Aside from this, there are other considerations to make. Some Autistic people report having this experience while watching films or other media that contain violent content. Should we now be considering that some forms of media may add to the trauma load that a person is carrying with them?

It raises questions about the ethics of depicting violence in creative media.

Whatever your experience, existing on this intersection can be exhausting, leading to burnout and deterioration in one’s mental health. We need more research to consider these kinds of issues that have an impact on our quality of life.

David Gray-Hammond 0 Comments
Jul 21 2023
How common is psychosis for Autistic people?

It’s no secret that the list of co-occurring traits and conditions that fall within the world of autism is exceptionally long. Autistic people tend to be multiply neurodivergent as well as having various health concerns. Despite this, there are certain aspects of Autistic experience that are not well discussed within our community. One of these things is psychosis.

Psychosis is more common in Autistic populations than people realise. Research suggests that almost 35% of Autistic people show traits of psychosis with up to 60% of Schizophrenia patients demonstrating clinically significant traits of autism. When we consider these statistics, it becomes clear that this is an issue that needs to be discussed more openly in our community. Unfortunately, due to the intense stigma surrounding psychosis, it often feels unsafe for people to have this conversation in public places.

Part of this issue is highlighted by the lack of mental health literacy regarding psychosis. One study found that 86% of participants could accurately identify traits of depression, as opposed to only 41.5% of participants accurately identifying traits of psychosis. To me, this is a result of media portrayals of psychosis. The term psychotic is often used as a synonym for dangerous and unstable. Schizophrenia is often mistakenly conflated with Dissociative Identity Disorder, and both demographics find themselves falling foul of movie directors who want to portray a dangerous person.

Within the Autistic community, there can be issues with getting people to speak up about lived experiences of psychosis. Fear of stigma and misunderstandings about this admittedly extreme manifestation of psychological distress can keep people silent, while others want to keep autism separate from perceived “mental illness”. This is problematic because it represents a significant risk of early mortality.

Autistic people are 9 times more likely to die by suicide with one of the primary causes of premature death in people who experience psychosis also being suicide. One might wonder of these findings are intrinsically related. The combined minority stress of being both Autistic and experiencing psychosis could represent a significant factor in the premature deaths of both demographics. Unfortunately, the research on this particular interplay is almost entirely non-existent. We need the discussion around autism and psychosis to open up in order to highlight contributing factors to these troubling statistics.

It isn’t surprising that psychosis is so prevalent in Autistic communities. Psychosis and trauma have an obvious correlation with population based studies showing a strong relationship between childhood trauma and abuse, and the emergence of psychosis. When we consider the effects of minority stress, whereby Autistic people suffer from the cumulative effects of systemic discrimination and oppression, we begin to see a world where in being Autistic almost becomes synonymous with being traumatised in some way.

Something else that is important to consider is the overlap between autism and ADHD. Research suggests that as many as 70% of Autistic people also present clinically significant traits of ADHD. one study found that 32% of adults with a history of psychosis reported ADHD traits starting in childhood with up to 47 % of those with childhood-onset Schizophrenia also presenting as ADHD. We also need to consider that both Autistic people and ADHD people have a significant likelihood of using substances. Substance use and psychosis have a significant enough relationship that there are specific NICE guidelines around this issues.

It is clear that psychosis is a significant issue in regard of the psychological wellbeing of Autistic people. In order to address these issues and create a world where Autistic people can thrive, we need to start talking about this. We also need to address lack of professional cultural competency in Autistic experience and presentation that may result in the connection between autism and psychosis not being identified in clinical and research settings.

Autistic people need good quality identification of psychosis and suitable support for their psychotic traits. Failure to do so is literally placing our lives on the line and failing a growing demographic within our population.

David Gray-Hammond 0 Comments
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