CAMHS Crisis: An Autistic parent speaks out

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

Autistic young people need services like CAMHS

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

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

Young person’s parent

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

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

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

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

Young person’s parent

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

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

Autistic young people often end up in psychiatric inpatient units

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

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

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

Young person’s parent

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

CAMHS and crisis teams

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

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

Young person’s parent

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

CAMHS and the invalidation of Autistic experience

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

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

All the wrong support was given.”

Young person’s parent

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

CAMHS wont help Autistic young people

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

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

Young person’s parent

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

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