Social problems and tangled thinking make victims of us all

Part one: in general

In my forays out of my shell this last week, I can’t help but find some common themes emerging among my encounters with people in similar situations to myself. Except, for the fact that, to some extent, I have been lucky enough to extricate myself from most of them.

The first (and forgive me, for these situations, in particular, will be relevant to only a small proportion of my readership, although the implications have resonance for us all) was a by-invitation only meeting at the children’s mental health service in Hackney for parents of children with ASD. Autism and its related conditions cross all social strata and this service, for parents of children with “high functioning” autism conditions – that is to say, children who are expected to be able to live independently, rather than the “rain men” (socially-inept geniuses of popular imagination) – aimed to bring us parents together and talk us through the diagnostic criteria for the condition, as well as help us to understand which services we could access once we had a diagnosis for our children.

As one might expect, the parents were friendly and talkative, swapping tales of exhaustion, antics and woe, grateful that their struggles had been noted and that there are others in a similar situation to them. But beyond a common diagnosis, there the similarities ended. A broad social mix revealed that some were struggling with problems far deeper than the behavioural idiosyncrasies of children with ASD, and this was producing the type of muddled thinking that only gets people in far greater knots.

During the course of the meeting, the speaker – a behavioural psychologist- talked about common myths surrounding ASD, one being that it can be caused by bad parenting. At this, many of the parents, perhaps themselves on the spectrum, as the condition has a strong genetic component, began to shout out (there was a strong disregard for the usual rules of public social interaction) particularly from one or two of the more vocal parents – that they had been the victims of blame and judgment for their child’s behaviour.

This is something I have real sympathy with. There was a time, when Jonah was younger, when he could sometimes be unmanageable in public, and I felt the weight of judgement, particularly from other parents, upon me. But even then, I felt like I was in someway responsible for how Jonah behaved. His hitting stage was excruciating, but I felt a low key approach, of removing him from the situation quietly and calmly and ignoring the expectations of other parents to demand an apology, and see “justice done” with a timeout or other punishment, would see the behaviour nipped in the bud, which soon enough, it did.

Public meltdowns could be exacerbated by late nights and bad diet. Engaging with his more peculiar rants seemed to increase them, so I learned to ignore, or rather, gently dissuade them. There was a time when I felt Jonah could have become brutalised by my reactions to his behaviour, and certainly, without doubt, I could have increased the oddity of his behaviours by failing to ignore them.

There were times, when tired, frustrated and angry, I did not mange to be so controlled or stoic, but the fallout was marked. “Bad” behaviours To which I responded negatively increased. There was a time when Jonah began to get “ticky” – behavioral ticks and even Tourettes can be co-morbid conditions, as are OCD, as are depression, ASD, Bi-polar and a host of other conditons, which took all my patience not to make worse by drawing attention to them and getting him just to stop by shouting. I released early on, thank god, that my only power was to rise above it. It took the patience of the saint, and on little sleep and with financial anxieties and mild depression, I didn’t always have it. Many are in the same boat.

Throw social deprivation, possible parental mental and behavioural problems into the mix and you have one hell of a problem on your hands, as was revealed by some of the stories that emerged from this meeting. Some of the parents were dealing with multiple exclusions, self-harm, bullying, severe mental illness, and of being generally downtrodden to the extent that even while they were begging for help, they had no idea how to access the services available to them, or even deal with people in a manner that would help them get the help they needed.

Poor people- and self-management add road blocks to recovery. It was hard to contain my own critical judgment, but you can see how problems snowball when poverty and social exclusion is added to the mix. It seems hard to unpick. One woman, from a cultural background where divorce is frowned upon and mental health problems barely acknowledged – as well as potential genetic homozygosity causing congenital problems adding to a range of conditions she was struggling with – had three children out of six on the spectrum and a husband who had left her to become a tramp, by her own account.

My heart bled for her, as she seemed, despite being neat as a pin in her hat, bobbed hair, knee length skirt and sensible shoes, beyond the brink of a nervous breakdown: out of options and out of help’s reach to a large extent, from her own expectations of society and of herself.

Yet all these people were facing the additional challenges of a child diagnosed on the spectrum, but to me, it felt this was the least of their problems, yet many there seemed to have latched on to their child’s diagnosis as being at the root of it all – a signed waiver and get out of jail free card to excuse and repeal all their issues. The resentment, and blame was sky high. No one seemed to know how to help themselves, and the services offered seem scant and piecemeal, offering little in the way of a solution.

Many of the parents, rather surprisingly had daughters on the spectrum, either awaiting diagnosis or diagnosed. There is increasing evidence to suggest as many girsl as boys are on the spectrum, most go undiagnosed as they seem to cope with the problems associated with the condition better, but as the speaker listed the usual presentation for girls on the spectrum, normally in secondary school, when social pressures begin to increase, her synopsis of the condition in girls was heartbreaking. She was describing me.

Withdrawn, socially anxious, depressed, possibly self-harming, girls on the spectrum get missed because they find it easier to mask the condition. Often presenting as anorexia, girls on the spectrum have the same obsessional behaviour as boys, they can become fixated with animals, horses, or fashion, or in girls who develop eating disorders, counting calories. They are often cast out of social groups, although some are happier in their own company than in a group, but for girls on the spectrum who want to make friends it can be secondary school can be very hard. As the speaker said, “girls can sniff out an oddball and can be very pointed in excluding them.”

I felt angry. My mental health spiraled in my girls’ grammar school to the extent I self harmed: my obsession with grades, and difficulty breaking into social groups making me isolated and depressed. Rather than getting help, adults would single you out as difficult, hard to get along with. It seems this is still often the case.

One woman at the meeting said the most useful thing she had ever said to the headteacher of her daughter’s school was that the treatment of ASD today can be likened to the treatment of dyslexia 25 years ago. The child is blamed. My grandmother was caned for left-handedness (and probably what was seen as stubborness). An open minded approach to diagnosis is needed now. I don’t think anyone can help how they are.

Trying to get diagnosed as an adult is hard, and often specialists are still using the same criteria to assess women as men, but there is increasing evidence that the condition can be markedly different across the genders. With my recent redundancy, having a diagnosis would have protected me, and made it much easier to bring a claim of unfair dismissal, after a long period of being excluded, and getting into trouble for questioning the powers that be. Office politics is hard to negotiate for anyone on the spectrum.

The upshot of the whole meeting is that better diagnosis of what is now known under the umbrella term of Autism Spectrum Conditions (Disorder seems to be losing credence as ASD is now considered to be a way of being rather than a medical condition) is at least giving vulnerable people a shelter from a society that often sees them as only having themselves to blame, when really they have been in a deluge of problems for generations.

A mixture of society’s muddied entitlement, deep insecurity and behavioral traps is a theme that has recurred throughout the week…