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

[UPDATE: The value of persistence]

Parents as Partners

Nope, this isn’t a post about Appalachian sexual practices. If that’s what you were looking for, then I’m sorry – for so many reasons.

For everyone else, it’s about attempting to balance the twin roles of parent and partner.

I’ve said before that the person who is everything you want in a partner can simultaneously be frustrating as hell to co-parent a child with. No matter how well you think you know someone, you can’t ever be sure what kind of a parent they’ll make until that kid pops out, and nor do you know how having kids will affect the dynamic between the two of you. You just have to have faith that whatever comes up, you’ll deal with it and get through it together, because that’s the commitment you made.

What I am discovering, as a father of a two-year-old and a seven-week-old, is that the gulf between words and reality is filled with sharp sticks and broken dreams – and a hefty dose of disillusionment.

You see, when you’re a couple, how one of you behaves as a parent inevitably affects how the other behaves. In an ideal world, each individual parent will have a mix of playfulness and responsibility, to differing levels, and you’ll share the load as best you can.

Unfortunately, it is not an ideal world.

In my household, my wife has abrogated all responsibility and so is situated right down the playful, irreverent, impulsive end of the parenting scale, alongside the fun uncle and your friend’s older brother who lets you drink beer. Trouble is, the only way to balance things is for me to go ever further towards the responsible, controlled side – I’m sitting with the school librarian and the ticket collector who won’t let you stand on the seats of the bus.

And I hate that.

While my wife dodges the surf with my toddler on a cold October day, I fret about the fact that they’re both now soaked up to the knees, the shoes will have to go in the washing machine to clean away the salt, and they’re going to freeze on the way home – not to mention we’re going to get sand in the car. While they carve their Halloween pumpkins, I hover around them on knife patrol, groaning as every drop of pumpkin juice splashes down onto the carpet, and trying to catch the seeds before the dog eats them. And while my wife is happy to say yes to just about anything, I’m the one who has to say no, and then deal with the nuclear fallout.

The trouble is, not only do your differing parental styles annoy the crap out of each other, they change how you see one another as partners as well. I’ve started seeing my wife as irresponsible instead of playful, argumentative instead of passionate, stubborn instead of determined and inconsiderate instead of simply absent-minded. For her part, she now sees me as boring, controlling, uptight and dogmatic instead of reliable, sensible, safety-conscious, and by-the-book. It’s all in how you define it.

Of course, matters aren’t helped by lack of sleep (mine), the spectre of postnatal depression (hers) and physical exhaustion (both of us). And to be fair, she has gone a long way down Nuts Street lately, with her moods up and down like a yo-yo, her OCD out of control, and the language she uses enough to make a sailor blush. So she blames her unreasonableness on hormones, I blame my irritability on tiredness, and neither of us really gets to be accountable for our behaviour, even though we’re driving one another up the walls and out the door quicker than a gas leak. I don’t remember the last time our wires were so completely crossed.

Actually, I do. It was a month or so after our first baby. Hmm, I’m spotting a pattern here.

On that occasion, things got better after I asked myself what it was I was doing that was unhelpful to the situation, and it turned out that I was being controlling and dogmatic, though for the right reasons – I was trying to help.

In similar fashion, I think I have located the root of our problems here, but they’ll be far more difficult to solve – it’s not what I am doing, but what I am not doing.

It was a throwaway comment in an argument that contained a thousand other throwaway comments, most of them spurious, many of them said simply to hurt me. It was that I’ve replaced her with the children, and on reflection, it’s a charge that I cannot deny. I have, over the past seven weeks, largely forgotten about my wife.

Well, that’s not true. As an autist – or maybe simply as a male – I thought that the fact I do all the nights and let her sleep, make most of the meals, sort out the dog, cat, chickens and fish, take the toddler to nursery and swimming and ballet, and do the lion’s share of the baby care so my wife doesn’t have to, showed the level of my respect and my regard for her. But it doesn’t.

I’ve been doing my damnedest since the baby arrived to make sure my toddler doesn’t feel left out, so what my wife sees is a man hugging his kids, telling them stories, making sure they’re okay, and then falling exhausted into bed – basically, giving them all the affection and attention he used to give her. And she feels left out, and resentful, and self-pitying. So she snaps at me, which makes me cross as I think, ‘Why isn’t she appreciating me?’ And then we argue, and the cycle repeats.

The solution? I have to show affection to my wife. I have to make time to give her hugs and cuddles, and tell her she’s special, and make sure she’s okay. Basically, I have to make her feel special.

Which is tough when I’m so busy and tired, and is tougher still when she says such awful things to me that I’d rather clip her round the ear than whisper sweet nothings into it. It’s like cuddling a rabid pitbull that hates you.

But it’s something I’m going to have to do. These are the sacrifices you have to make when you’re a parent as well as a partner.

Autism and OCD: the Sacred Half-Banana

Thanks to the nature of autism, many of us with the condition have other psychological problems that are either caused by our autism or overlap with it. Combine the rigid, obsessional thought processes associated with autism with the anxiety and poor coping mechanisms that are often part and parcel of living with the condition, and you have the recipe for obsessive compulsion. So it is, then, that at times of stress and anxiety we can slip into full-blown obsessive compulsive behaviour and lose all sense of proportion, driving the people around us to despair.

And when I say ‘we’, I mean my wife Lizzie.

And by ‘people around us’, I mean me.

And instead of ‘being driven to despair’, a better metaphor would be that I am steaming uncontrollably towards a mid-Atlantic collision with an iceberg on a dark April evening. All because of half a freaking banana.

It all started a month ago when we returned from holiday. Every night after I’ve put Izzie to bed, Lizzie goes around the lounge and tidies up the baby’s toys. And given that Lizzie’s other big obsession right now is buying toys for the baby, we have an awful lot of them. Before going to Toys R Us to get something, I just check the massive pile of plastic bags stacked up in the corner of the study, and odds are we’ll already have at least two of what I’m considering buying.

Anyway, Lizzie’s particular inclination is that all the toys have to go back complete – if the toy food blender has six shapes that go inside it, then when it goes back on the toy shelf it needs to have six shapes inside it. Not five inside it and one in the box of building blocks, but all six inside it. This is non-negotiable and woe betide anybody who forgets.

So, a month ago we return from holiday, play with Izzie for a couple of hours, and then I put her to bed as usual. Lizzie tidies the lounge and – gasp – half the toy banana from the kitchen set is missing. We have both halves of the tomato, the pepper and the carrot, and the three parts of the cucumber, but only one half of the banana.

In the normal scheme of things, you might think this is minor. I thought so myself, it being a two-inch long piece of yellow plastic with a bit of Velcro stuck to it. Unfortunately, I hadn’t realised that in Lizzie’s mind it was the Holy Grail and it had just been stolen from us by person or persons unknown.

My reassurance that ‘it’ll turn up eventually’ didn’t cut the mustard. Before the holiday, the sacred banana had been complete, entire, unsullied – Izzie had only been in the lounge a couple of hours upon our return, thus it could not have gone very far. We had to find it.

Many hours after midnight, having overturned the sofas, emptied all the drawers and cupboards, removed the building blocks piece by piece from their boxes, turfed the dog out of her bed, checked behind the fridge, in the cat litter and around the driveway (as if!), I managed to persuade an increasingly irascible Lizzie to come to bed, we’d find it later. Problem solved – or so I thought.

The following day we repeated the exact same process, double and triple checking all the places we’d already double and triple checked the night before. I ended up checking through the bins, the nappy bin, the freezer, inside the guitars, stretching my hands into deep, dark crevices no mortal ever dared to delve. Still no banana.

Long after midnight, I managed to persuade Lizzie to come to bed, where she tossed and turned all night, no doubt dreaming of incompleteness.

It was two-thirds of the way through the third day of the search, after putting the baby to bed and moving the sofas for perhaps the eighth time, that I finally declared enough to be enough. Actually, I think what I might have said was something along the lines of, ‘I’m all out of f**ks to give about half a goddamned plastic banana! Don’t ever mention it to me again, I don’t care anymore, there’re another two plastic bananas in the corner of the study anyway, for God’s sake, let me live, why won’t you let me live!’ And suchlike and so forth.

Two days later, Lizzie stopped moving the furniture. Two days after that, she stopped talking about the banana.

But the stage was set. The anxiety was there. And it manifested itself late every evening with the words, ‘Have you seen…?’

Every evening for the past month, Lizzie has lost something and pressganged me into helping her find it. Mostly it’s Izzie’s hairclips, less than an inch long, or her dummies, transparent. Sometimes it’s pieces of paper, a scrap torn off the back of an envelope on which she has written the world’s most important information. Quite often it’s socks, which necessitate going through the sleeves of every item of clothing we own in case it’s become lodged inside in the wash. Occasionally it’s earrings, tiny, insignificant, nigh-invisible earrings. Every single evening, give or take.

I’ve been under the sofa so many times now, I can describe it better than the back of my hand. The inside of the dustbin no longer holds any mysteries. The sound of building blocks being removed from the box one at a time fills me with dread, and every time I hear the words, ‘Have you seen…?’ my blood chills within me. No, I haven’t seen it. But I guarantee we’re spending the next two hours searching for it.

There are two possibllities for explaining this behaviour. The first is that, because both sets of our parents were away, Lizzie has been anxious for the last month, and this anxiety has triggered an obsessive need to have control over the minutiae of our household to distract her from her own feelings of vulnerability. Once triggered by the missing banana, her mind became stuck in a loop of repetitive, obsessive behaviour, fostered by her rigid autistic way of thinking.

The second is that she’s faking all these disappearances and we’re still searching for that flipping plastic banana!

Which does, to be fair, remain something of a mystery…