An open letter to the Mental Health Community

Dear doctors, psychiatrists, psychologists and other Mental Health professionals,

As somebody who accessed Mental Health services for much of his teens and twenties – and, depending on the person that I saw, was variously diagnosed with clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder and emotionally unstable (borderline) personality disorder, and prescribed all manner of antidepressants and mood stabilsers – may I begin by saying that I have nothing but respect for your profession. It is a very problematic and stressful area of medicine in which to specialise, and much of your work is more an art than a science. I am therefore fully cognizant of the pressures under which you work, and the difficulties that you face on a daily basis.

It is therefore with the best of intentions and sincere regret that I feel I must bring to your attention an area in which you could be regarded as failing in your duty of care. This is in the provision of services to adults with autism, particularly high-functioning members of the community, to whom your behaviour often amounts to nothing less than a flying kick to the balls – with both feet. Allow me to elucidate.

When I was working through my various (mis)diagnoses and battling the side-effects of my numerous sedating, mind-numbing and libido-crushing medications, I very helpfully had monthly reviews from a psychiatrist and weekly sessions from a counselling psychologist, such were my mental health difficulties. Indeed, they provided a measure of stability in an otherwise chaotic and trouble-filled life.

It was a little disheartening, then, when upon being diagnosed with Asperger’s Syndrome at the age of 28, I was immediately discharged by the Community Mental Health Team because ‘autism isn’t a mental illness’, and handed over to the Learning Disabilities Team, who said that ‘we have no services for high-functioning individuals’ and immediately discharged me also. This was ten years ago, and in all that time I have had no further input from the Mental Health Team or Learning Disabilities Team.

This makes me wonder, therefore, if you think that my clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder, and emotionally unstable (borderline) personality disorder were merely symptoms of autism, rather than separate but co-existing mental health conditions, or if you thought that all of my problems with mood, identity, anxiety and depression would simply vanish alongside the diagnosis of autism? Surely, you did, else it would have been unethical to discharge somebody who had been receiving mental health treatment for over a decade without ensuring they were fully ‘cured’ and no longer needed mental health input.

To make it absolutely clear, I am wondering whether you think that having autism precludes the possibility of a person having mental health difficulties too? Because that seems, to a layman, a little like washing your hands of people who need help simply because you can pass the buck and attribute all their problems to autism.

Allow me a further, more recent example. My wife also has a diagnosis of autism and we have two children. Of late, her mental health has deteriorated quite badly, which has had a deleterious effect on our marriage and my ability to support both her and our children. In brief, her moods swing like a yo-yo, from hateful and aggressive and irrational to childish and giggly and equally irrational, and back again in the space of ten minutes; her OCDs mean she spends five hours an evening searching for things she has lost; she misremembers what has been said, or makes things up and believes them; struggles to differentiate fantasy from reality; at times seems out of control; is paranoid about people conspiring against her, then contacts others to conspire against me; continually empties her bank account buying pink plastic toys for our girls (eight dolls houses, seven push chairs, fifteen pairs of shoes); sabotages everything good that she has going for her; asks me to move out and take the children and then tells me she can’t live without me; is suffering the worst confidence, self-esteem and anxiety crises of her life; shuts down and retreats into her own world if she cannot handle things; and is worrying all her autism-specialist support workers, who have seen her behaviour first-hand and believe it to stem from some mental health disorder underlying the autism.

Now, to get my wife to acknowledge she has a problem has been tantamount to climbing Everest, but with much help and support from Children’s Services, who are equally concerned about her, and the Health Visitor, who similarly agrees, we managed to get her to attend to an appointment with her GP. She was accompanied by her Autism Support Manager, an expert who has known her for ten years and says that her behaviour is not normal and not consistent with autism. Her GP agreed that her behaviour was very troubling and, given the impact it is having on our marriage and her ability to look after the children, made an urgent referral to the Mental Health Team to have my wife assessed.

I have been castigated by my wife’s family for seeking help, for talking to people outside the family, for being honest. They told me I have betrayed my marriage, I am going to have my children taken away, everything is my fault and I should never speak to anybody about anything, but I have done this through a genuine desire to save my marriage, to get my wife help and make things better for her by giving her access to the wonderful abilities of Mental Health professionals such as yourselves. I was sure that you would be able to help.

You can therefore imagine my horror and disgust to receive a letter from the Mental Health Team saying that, after receiving the referral, they had ‘discussed’ my wife’s case and decided she doesn’t have any mental health problems and therefore doesn’t need to be assessed and has been discharged. Clearly, then, you think that OCD is simply a side-effect of autism; rapid mood swings are a side-effect of autism; irrationality and self-destructive behaviour are side-effects of autism; paranoia is a side-effect of autism; depression, anxiety, low self-esteem and low confidence are side-effects of autism; and everybody who knows her and suggests she is suffering mental health problems is simply wrong, because she has autism and that trumps all. Indeed, I imagine that if she was hearing voices, or believed she was the Queen of Sheba, you would attribute that to her autism also. I would therefore like to ask: exactly what does it take for Mental Health professionals to see somebody with autism?

In society, those of us on the autism spectrum suffer a great deal of prejudice from people who see us as a label, a walking, talking diagnosis ripped from the pages of the DSM, instead of unique individuals. It is appalling that we must experience this same stigma from the Mental Health Community, who really ought to know better. Just because we have autism doesn’t mean we don’t also have mental health difficulties, and certainly should not give you the right to decline to see us simply because we have a developmental disorder to which you can ascribe all our problems.

I know that money is tight in this age of austerity and it helps your budget to fob off people with autism to other, less appropriate departments, but you might like to ask yourselves whether discriminating against an entire section of society – many of whom are struggling with various mental health disorders and very real distress and anguish – is right, or helpful, or fair.

In summary, I have sought your help because my wife’s mental health has been deteriorating, but you have refused to see her because you have decided all her problems are concomitant with a diagnosis of autism, placing the onus on me to hold this family together without your specialist assistance. I can only hope that her mental health does not continue to decline to the point at which even you can’t ignore it.

Warm regards and best wishes,

Gillan Drew

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7 thoughts on “An open letter to the Mental Health Community

  1. Wow, this post is so powerful! I am not in the UK, and here in the Netherlands, most mental health teams do take on autistic people at least if they have co-existing mental illness. I at least am accepted at an assertive community treatment team (I have co-existing depression and BPD syptoms). However, I have somewhat of an opposite experience to yours and your wife’s. I have an at least average IQ but function in many respects at a level that causes me to best be served by the learning disability services. Yet I also do happen to have autism-related challenging behavior. This causes th learning disability services to dismiss me because “you have psychiatric problems, we don’t do that”. To illustrate, a man at my day activities who is autistic with a co-occurring intellectual disability, gets one-on-one throughout the day, yet this same day activities center cut my hours because of similar behavioral challenges. In short, though mental health for high-functioning autistics is okay here, many autistic individuals still fall through the cracks of the care system here too.

    Liked by 1 person

    • It’s very saddening that despite all the progress we’ve made in recent years, there’s still a lack of acceptance or understanding of people with autism. It’s neither a learning disability, nor a mental health disorder, but shares facets of both and often co-exists with them, so we fall between the two departments (LD and MH), with neither side wanting to take responsibility. I understand they have their boundaries of what they do and do not deal with, but it’s not our fault we don’t fit their criteria, and that doesn’t mean it’s acceptable for us to receive a lower quality of care than a person with a straight mental health disorder or straight learning disability. Instead of a rigid demarcation between the two departments, a slight overlap would surely give those of us with autism a place to belong.

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  2. I find it extremely odd how some mental health professionals will dismiss psychiatric symptoms comorbid with autism, or even caused by a form of ASD (such as MCDD) as untreatable because of the autism. Yes, there are neurological differences at play, but that does not mean that treatments such as CBT or other forms of therapy are suddenly entirely ineffective, or that medication won’t do anything. Autistic brains are still human brains and roughly the same rules do still apply to them. We’re not a different species that is to be beheld in silent wonder, from a distance, and left to its own devices. Sometimes it does feel like that’s how people consider us, though. I sincerely hope that your wife will receive the care she needs — this situation sounds unfair to all of you.

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  3. I just wanted to check in with how your wife is doing? A lot of what you have written resonates with me with my own familial challenges. Just wanted to show solidarity 👊🏼.

    Liked by 1 person

    • Well, the GP has thrown a whole bunch more meds at her which have turned her into a zombie, so there’s been less confrontation – although what there has been has been particularly nasty because she’s less inhibited in what she says and can’t stop herself from expressing her worst emotions. In between times, since starting on them she’s retreated further into herself, just sits on the sofa staring at her phone, oblivious to what’s going on around her. It’s like she’s become completely cut off.

      On the plus side, I’m now doing a course in Anxiety Management, depression and CBT and bringing what I’ve learnt home and trying to teach it to her. Whether it’ll make any difference, I’m not sure, but something has to change as we can’t continue the way we are.

      I hope that your own challenges can be overcome. Fighting the good fight is the only way I know how to deal with things.

      Thanks for the support, and all the best.

      Gillan

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  4. Gillan, I am a new reader of your posts and am also almost finished reading your excellent book about Adults newly diagnosed. You are a very talented writer. I am very sorry that your wife is having difficulties. I wish and hope only the best for you and your family.

    Like

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