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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.

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.

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.

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.

The NHS wants to put surveillance equipment in psychiatric wards: Here’s what’s wrong with that

Psychiatric wards are a challenging environment for patients. Staff often forget that they work where a person is very often forced to live for an extended period of time. At the best of times, patients on psychiatric wards can feel very restricted, with some being monitored on a one-to-one basis 24 hours a day. It’s also no secret that a number of abuses have been brought to light in the last few years. In particular there was the abuse taking place at the Edenfield Centre, one of the UK’s largest psychiatric facilities.

As if abuse of patients’ rights is not already a significant enough issue, the NHS is now seeking to roll out something called Oxevision in all inpatient psychiatric facilities. Oxevision uses cameras and infrared detection to measure vital signs, monitor a patients movements with their room, and alert staff to anything unusual. It can even tell staff how long a patient has been in the toilet. More information from the people who designed this can be found here.

The first counterpoint to any resistance against this technology is likely to be that patients have to consent to monitoring. My response to this would be that consent only works if you can trust staff. Between the frequent stories of abuse, and the mature of the types of distress patients in psych wards experience, I believe consent is meaningless.

As an Autistic and Schizophrenic individual who has been a psychiatric inpatient, I can tell you that I would not trust staff to honour my consent or lack thereof. The use of oxevision has the potential to make patients feel incredibly unsafe in an environment that is meant to help them.

We also need to consider a patients rights. Both the Mental Health Act and Mental Capacity Act require staff to use the least restrictive option. The use of Oxevision restricts a patients human right to privacy, and thus, their liberty by allowing staff to intervene whenever they see fit. There is a fine line between patient safety and deprivation of liberty.

It is fundamentally wrong for patients to be under 24-hour surveillance in their private space. Patient liberty is already heavily restricted in psychiatric settings. How does the NHS justify this?

This is a flagrant abuse of patient rights, and as with many of the abuses in the psychiatric system, it’s being sold with a helpful smile.

Please sign this petition calling to stop the rollout of Oxevision.

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.

CAMHS is not fit for supporting Autistic young people: Here is the evidence

It’s no secret in the Autistic community that autism is a deciding factor in the success of a young person’s referral to CAMHS. For a long time, Autistic people and their families have been speaking out against the practice of gatekeeping of services and diagnostic overshadowing by professionals. During my time trying to put these failures into context I have found some interesting pieces of evidence that prove the government have known about these failures for a long time. In this article I intend to go over the executive summary of a 2014 document submitted to parliament by Act Now For Autism.

What did the document look at?

The document considered the real life experiences of Autistic people and their families when engaging with CAMHS. Despite the revelation of egregious failures as early as 2014, our government has still failed to address the issue. I have previously covered another one of these documents from a similar time period. Charities have been presenting the government with data for some time now, and yet nothing changes.

The executive summary of the document

I will now go through each point in the executive summary, providing commentary and context for the findings.

“Far too many CAMHS lack the required level of expertise, knowledge and understanding about autistic spectrum conditions. A lack of expertise, knowledge and understanding of autism is preventing the service from being able, to support and to meet the mental health needs of children and young people with autism.”

Act Now for Autism document CMH0205

Sadly this isn’t something unique to CAMHS. Professionals around the world are often taught stereotypical, race and gender biased presentations of autism. On top of this, professionals often lack experience of Autistic culture. In truth, the positioning of autism as a disorder within the realm of psychiatry means that most professionals do not even know of the Autistic community, let alone the fact that we have our own culture and language.

This is a matter of cultural competency. Professionals can not create a safe space to work with Autistic people while they lack an extensive understanding of Autistic culture. This knowledge is vital to the establishment of beneficial therapeutic relationships, a lack of competency in Autistic experience and culture is probably one of the driving factors behind the assertions of gaslighting and invalidation inflicted on Autistic people by mental health professionals.

They simply don’t believe our description of our own thought processes and experiences.

“A talking shop, nothing more. Words but no action.”

Act Now for Autism CMH0205

This is quite a common experience for Autistic people of all ages. In particular it connects to the previous point. It does this because in these talking experiences, Autistic people of all ages often spend more time educating the professional about their experiences and thoughts. This highlights (once again) the distinct lack of knowledge among professionals. Because of these things, professionals often talk a good game while failing to follow through on any meaningful support. The service user is then positioned as “not engaging” in order to shift the blame away from a inadequate service.

“The professionals who operate the triage system for some CAMHS have no understanding of autism whatsoever and so children are not being referred on to professionals who may be able to meet their mental health needs.”

Act Now for Autism CMH0205

The triage system is a point of contention for many people trying to access CAMHS, it is not just a problem for Autistic people. The criteria set forth is usually very restrictive in order to gatekeep access to resources that are in short supply thanks to years of the government under-funding services. In terms of Autistic people and the triage system, however, there are some important notes to make.

Statistics suggest the 70-80% of Autistic children have experienced a mental health problem in their lifetime. Despite this, only 1 in 10 CAMHS patients are estimated to be Autistic. It seems reasonable to assume that this disparity may begin at the triage level. Professionals who do not understand co-occurring neurodivergences will inevitably not understand how alexithymia affects the presentation of one’s mental health or things such as atypical burnout that may again cause an Autistic child to present to services differently to non-Autistic children.

If professionals screening Autistic young people do not have a good knwoledge of autism and Autistic experience, many children and young people will inevitably fall through the cracks.

“An inability to identify real need. Suicidal children and self harming are often not taken seriously by the services.”

Act Now for Autism CMH0205

This is a pervasive issue with professionals often invalidating self-injurous behaviour as a manipulative tactic. This is deeply alarming given that we know Autistic young people are up to 28 times more likely to think about or attempt suicide than the general population. Autistic young people have died under the care of CAMHS and attitudes such as those outlined above are a major contributory factor.

“The service is fixed and rigid and unable to differentiate its provision to meet the mental health needs of children and young people with autism.”

Act Now for Autism CMH0205

A good mental health service will have flexibility and be led by the service user. There is no one-size-fits-all approach to mental health. Rigidity and lack of individual differentiation only reinforces power imbalances between the service user and professional. Such practices reduce the accessibility of the service, positioning Autistic people as refusing to engage when in fact professionals have made the environment hostile by expecting conformity.

“It can take months, or even years before a diagnosis of autism is given.”

Act Now for Autism CMH0205

This situation has only become worse in the years since this evidence was presented to parliament. Nice guidelines state that patients should be seen for a first appointment within 13 weeks of referral. Despite this, 84% of the approximately 190,000 people awaiting assessment are waiting beyond this with waiting times expected to exceed two years. In the meantime, CAMHS will turn away children awaiting assessment for or currently diagnosed with autism. Not only are children not being diagnosed and supported to thrive as an Autistic person, their mental health is being neglected by the very people whose job is to help them.

This is assuming they even refer you for diagnosis, and that you don’t fall foul of parent/carer blame and/or accusations of Fabricated or Induced Illness (FII)

“After diagnosis there is often no more contact with the service at all.”

Act Now for Autism CMH0205

Once again, this comes as no surprise. Post-diagnostic support in the UK is, quite frankly, abysmal. It doesn’t exist. To top it off, autism diagnosis is often used to deny support by CAMHS in favour of learning disability teams that also lack the specific expertise to understand Autistic presentations of mental health. Of course some CAMHS locations use diagnosis to refer you to safeguarding, which can cause all manner of problems for the Autistic person and their family.

“CAMHS are often very reluctant to tell the parents if the team they are seeing with their child has any specialism in autism.”

Act Now for Autism CMH0205

I personally feel that behaviour like this is a significant red flag. If a professional won’t tell you whether they have the expertise to support your child, they probably don’t. You wouldn’t expect a heart surgeon to hide whether or not they have the expertise to perform heart surgery, why do we allow this in CAMHS?

“Parents are physically uprooting and moving to other areas in a bid to access the much needed mental health support that their child or young person requires.”

Act Now for Autism CMH0205

Sadly, this is not a surprising revelation. Mental health provision in the UK has always been a postcode lottery with some areas having markedly better services than other parts of the country. Despite this disparity, people from all areas of the country are reporting the same issues outlined in this article. If your service is so unfit for purpose that people are having to move their life to a different area to avoid you, you have some significant issues to address.

“There is no transition between children’s and adult mental health services and often no adult mental health services to access post 16.”

Act Now for Autism CMH0205

This is a significant issue. For those with an EHCP in place, transition to adulthood is supposed to begin at 14 years of age. Sadly, this is often neglected. In terms of CAMHS, there is often an attitude that we outgrow our struggles by age 18. Adult mental health services are difficult to navigate and just as difficult to access as CAMHS. The lack of transition from CAMHS to adult services endangers the wellbeing of countless Autistic young people.

Conclusion

Do not forget that this document was presented to parliament in 2014. That’s nearly 10 years ago. Nearly a decade later we still have not made progress. Autistic young people and adults continue to suffer and die needlessly because of the failure of services such as CAMHS. The refusal to adequately improve services is, in my opinion, tantamount to criminal neglect of their duty of care. It is only by publicly holding these services accountable that we can ever hope to see meaningful change.

Please help us start the change by signing this petition

Read the full document this article is based on here

Spectrum 10k and Autism Speaks are linked: here’s the things that link them

Autism Speaks are widely detested within the Autistic community. Since their inception, the horrendous “I am autism” commercial, and their ongoing attempts to eradicate autism and Autistic people; they have demonstrated themselves as an organisation that is not an ally to Autistic people. Spectrum 10k has revieved a similar reception from the Autistic community. It seems requesting the DNA of 10,000 Autistic people for “definitely not eugenics” reasons (but they can’t guarantee others wont use it for eugenics) has quite predictably upset far more than 10,000 Autistic people.

In a new and interesting development, activist and blogger Fierce Autie has made a connection that we all suspected might exist, but never had any tangible proof of. Now, thanks to the work of this activist, we may well have our connection. Link to their post below:

Fierce Autie’s blog post revealing the connection between S10k and Autism Speaks

There are two points to things to look at here, The Wellcome Trust and the Autism Genetic Resource Exchange (AGRE). Both have ties to Autism Speaks.

What is The Wellcome Trust?

In their own words:

“Wellcome improves health for everyone by funding research, leading policy and advocacy campaigns, and building global partnerships.

Collaborative research that involves a diverse range of people from different fields of interest is key to progress in health science – and to achieving our aim of fostering a healthier, happier, world. But many researchers feel they lack the time, finances, and creative environments they need to make breakthroughs.  That’s why we’re committed to funding ambitious global research projects that will transform our understanding of life, health, and wellbeing.”

The Wellcome Trust “what we do” page

For the purposes of Spectrum 10k, what you need to know is that The Wellcome Trust is the primary sponsor of this £3 million research project. Aside from comments on how that £3 million could have been better spent, this trust is deeply connected to S10k.

What is interesting as you will see within Fierce Autie’s blog post is that The Wellcome Trust received part of a $1.6 million grant from Autism Speaks to fund research into diagnosis and screening methods in moderate to low income countries. While we can not definitively say one way or another that money from Autism Speaks ended up in the Spectrum 10k banks account, what we can say is that The Wellcome Trust has direct links to Autism Speaks.

What is AGRE?

Again, in there own words:

“The Autism Genetic Resource Exchange (AGRE) is a gene bank housing data and biomaterials from over 2000 AGRE families, most of whom have two or more children on the autism spectrum.  Although for over a decade AGRE has collected most of these materials in the family home, we have now moved into the role of a Data Coordinating Center (DCC), receiving data and biomaterials primarily from outside researchers.  As a DCC, AGRE will continue to expand its resource by collaborating with researcher institutions who are working directly with families who have children on the autism spectrum.  We will further in our mission to accelerate the pace of autism research by enlarging our resource and continuing to make it available to autism researchers around the world”

Autism Speaks “AGRE for Families” page

The Health Research Authority (HRA) states the following about S10k:

“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks. As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”

HRA “Spectrum 10k update” (May 2022)

AGRE represents an undeniable link to Autism Speaks and is a strong indicator that this project may share goals and views with them (in my opinon).

What does this mean?

These points come together to show us that once again we have been lied to. Fierce Autie’s blog post shows tweets from Spectrum 10k’s twitter account denying any connection to Autism Speaks, while they full well know they are connected. Yet again, the significance of our joint statement is brought to light. What’s more, the fact that we have been ultimately ignored by the HRA shows us that they are closer to Autism Speaks than they are to the Autistic community.

If you needed anymore reasons not to give them your DNA, here it is.

Read more on the Spectrum 10k page of this website.

What being Autistic has taught me about attitudes towards mental health issues

Autism and mental health. There are those who will tell you that the two are separate. Autism is not a mental health problem, with the underlying implication that mental health can’t be the realm of neurodiversity. However, it is not that simple; what we know as “mental illness” has been positioned as such for a reason. Autistic people are privileged that our community is making space between autism and illness, but what of those whose neurology is still widely pathologised?

How many Autistic people have a mental health problem?

Finding accurate estimates on this are difficult for a number of reasons. Chiefly, studies only look at those who have been formally identified as Autistic, ADHD is usually included as a mental health problem (more on that later), and they also do not account for the many Autistic people excluded from the knowledge of their own “mental health issues”.

What I did find was that Autistic people are much more likely to have co-occurring mental health issues. It is important to note this as it sets the scene for why this is an important topic to Autistic people.

How “mental illness” mitigates the benefits of the neurodiversity movement

Autistic people have spent decades trying to liberate themselves from the pathology paradigm. While that work is not complete, we are significantly distanced from pathologisation compared to half a century ago. The pathology paradigm, however, is insidious, and slows our progress in other ways.

Autistic people experience much higher rates of trauma than the general population. Trauma almost inevitably leads to mental health issues. From depression to psychotic disorders; these diagnoses keep us tethered to the systems of the pathology paradigm.

Consider that innocuous name; “mental health”. Health has long been the remit of the medical establishment, which itself is a tool of the pathology paradigm. This creates a dependent relationship between the “mentally ill” Autistic person and the medical world. While we work to liberate autism, we have allowed ourselves to be chained to the very system we seek to escape.

The oppressive systems of the world have done a very good job as well. Even insinuating that “mental illness” isn’t actually illness can bring you backlash from various groups and individuals. The world has just accepted that this very human reaction to suffering is something to be eradicated. We have become complicit in our own oppression.

How do we escape this?

Think back to my earlier comment about ADHD being included in studies of mental health. Neurodivergent people almost all agree that ADHD is not a mental health issue, and yet researchers and medical professionals still position it as such. This, along with the ongoing liberation of Autistic identity, proves that an identity is only a psychiatric disorder while we allow it to be.

Never forget that homosexuality was also in the DSM at one point.

We have to recognise that what is viewed as mental “illness” is acquired neurodivergence. We can’t have this discussion, also, without mentioning the immense monetary value of the concept of “mental illness”, particularly in the Western world. We have created an environment where it’s become okay to take away a person’s right to consent to medication if they are deemed mentally unwell enough.

We need to give our mental health the same treatment that we give our being Autistic. We need professionals to effect meaningful change in our lives. Not just prescribe us medicine. I am not in any way saying that medicine doesn’t have its place. The antipsychotics I take have become an important tool for managing my traits in a world that can not accommodate them. What I am saying is that we need to tackle the issues that cause psychological distress.

Autistic people are weighed down by their own oppression because we have been told it is illness. The blame has been shifted from a neuronormative society and placed onto those injured by its violence. If we as Autistic people want to be free of the pathology paradigm, we need to be free of all systems of oppression.

Why do CAMHS fail Autistic service users?

Child and Adolescent Mental Health Services (CAMHS) are the main mental health services for children and young people in the UK. The service is largely known as a branch of the NHS, although private services often have their own CAMHS service. Their remit is to address mental health issues within people under the age of 18.

In principle, this sounds very good. A free NHS service that works with young people experiencing mental health issues. Unfortunately, their is a significant disparity in how they support Autistic young people. To be blunt, they dont, with the vast majority of Autistic people being turned away. This is problematic for a number of reasons that I will talk about in this article.

What happens when Autistic young people are turned away?

One of the most frequent things to happen is that Autistic young people and their families will be referred to MASH as a child in need. This is problematic for a number of reasons:

  • Institutionalised Parent Carer Blame (IPCB)
    • IPCB refers to the institutional practice of shifting blame for an individuals struggle onto their parents or carers. This practice often means that parents/carers are sent on courses to improve their skills while no meaningful support is offered to the young person. At the very worst, it has resulted in accusations of Fabricated or Induced Illness (FII).
  • Social workers can not provide therapy or medication if it is needed
    • It is not within the remit of social workers to provide diagnosis or treatment of mental health issues. Often, they are involved in the institutionalisation of those with mental health issues, but are unable to do more than refer on to other services.
  • Loss of trust
    • Many families of Autistic young people have negative experiences of social workers. Referring someone as a safeguarding issue compounds the trauma that we already experience frequently and has the potential to cause of loss of trust in services that is harmful to the young person.

Something else that often happens is the passing of the Autistic person to Learning Disability services. This is inappropriate and comes from the misunderstanding of what learning disability and autism are. While they can frequently co-occur, they are not the same thing. I have heard many learning disability professionals question why Autistic children are referred to them.

Some areas have specialist autism services. This might sound promising, but is afflicted with many issues:

  • Professionals lack competency with regard to Autistic experience and culture
    • The vast majority of professionals do not know that the Autistic community exists, let alone access it or learn from Autistic knowledge.
  • Some professionals have a great deal of ableism in their views
    • Ableism is everywhere, including the Autistic community. It should come as no surprise that services contain a higher rate of abelist views than the general population.
  • Services often focus more on teaching neurotypical skills than supporting the mental health of Autistic young people.
    • Teaching an Autistic child to mask their Autistic behaviours in favour of appearing more neurotypical is actually going to lead to further mental health issues.

There is, of course, another possible response at the other end of the spectrum. Autistic young people can be inappropriately sectioned and locked away in Assessment and Treatment Units for extended periods of time. Anyone who thinks that the days of institutionalised Autistic people is over need look no further than the more than 1,200 Autistic people currently in mental health units. This tends to be the result of no prior support leading to catastrophic consequences with many spending years lovked away.

Why do these failures happen?

Autistic people are positioned as lacking competence to run their own lives. We are also subject to worldwide dehumanisation and mistreatment. Many services claim to be neurodiversity affirming, but in practice, this is often very performative and used as more of a buzzword than anything else.

In order to effectively support Autistic people, CAMHS professionals would have to not only let us through the door but also learn a completely new set of skills and restructure the way services engage with those accessing them. Not only do the funding and resources currently not exist to do so, but a vast number of professionals believe there is nothing wrong with current ways of treating Autistic service users.

It is part of a wider issue in society with disabled people being told they should be grateful for their mistreatment and that we are burdens on a struggling system.

While CAMHS is failing Autistic children, we will continue to see needless deaths and suffering our community. When I think about my own experiences with CAMHS, I can’t help but think of my own privilege in being able to turn it around.

So many don’t have the privileges that I do.

How do we combat this mistreatment?

Changing CAMHS into something that works for everyone is a long process, but at the heart of it is the work of Autistic scholars and knowledge creators/communicators. Each of us must continue to make noise and speak about this issue. Nothing is more detrimental to human rights than silence.

Silence is a de facto compliance with oppression. The paradox of tolerating mistreatment and dehumanisation is that we allow it to perpetuate. Services can be viewed as broken at this point. The only way to recover is through open communication and acceptance and correction of past mistakes. The usual service line of “we will learn from this” is not enough for all the Autistic children who have been fatally failed by CAMHS.

The only way this situation changes is by each of us telling our story. We need every person failed by CAMHS to speak out. We must draw a line in the sand at this point and say no to the exclusion of Autistic people from support they are entitled to.

Please sign this petition to help start making a change to CAMHS services.

For more information, visit the CAMHS Crisis page of this website.

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