Mountains and molehills – why I ‘sweat the small stuff’

’Don’t make a mountain out of a mole hill!’ That was one of those confusing sayings when I was a kid. I worked out that it meant I shouldn’t get really upset about little things and make them seem more troubling than they were. For an autistic person, there is a flaw in that reasoning.

Some people’s ‘mountain’ may be another’s ‘molehill’ – what is signifiant to one person may be largely irrelevant to another, and vice versa. For Autistic people, we often ascribe meaning to things non-autistic people see as irrelevant. For an autistic child, a change in the routine of class may cause a meltdown whereas the non-autistic children in he class may not even notice. In that situation, a teacher who is not experienced in working with autistic kids might be annoyed with the autistic child’s response. S/he may even discipline them for poor behaviour but to the autistic child the change was a big, stressful thing.

Understanding what is important to an autistic person and what will impact them is a really important part of being our friend, partner or a supportive teacher or clinician. I have some examples from my experiences with psychiatry which hopefully illustrate this issue as it is experienced by an Autistic adult.

I shall set the scene. I am a forty-two year old author and respected member of the autistic community. I live in a house which I purchased eight years ago. I am a ten year veteran of the Australian Public Service, I have spoken in front  of many large audiences, including for TEDx canberra in 2013. I have a Masters degree and a number of major awards, including ACT Volunteer of the Year. I am seen as intelligent and articulate. I am considered ‘successful’ within the autism world and the wider community. People who don’t know me well are often surprised that I struggle with many things others might not notice.

I have a mental illness which is fairly well managed at the moment. However, I still need to see a psychiatrist regularly. My two most recent psychiatrists have been lovely – respectful, kind and treat me as an equal. However I had to leave one of the and I am struggling to stay with the latest one. This is not due to any poor clinical behaviour, mistakes or rudeness by the respective doctors. The reason is logistics.

The psychiatrist I left last year worked in public mental health clinic. It was one of those awful places when all the doors were locked and the reception staff sat behind a glass screen which went right up to the ceiling. (I was always tempted to ask them to count my coins or deposit a cheque!)  The whole setup smacked of paternalism and control. The waiting room was tired and sad – magazines from ten years ago lay unread and the walls were plastered with black and white photocopies of factsheets on mental illness, This was not what put me off though, unpleasant though it was. The final straw was when the lovely receptionist who was always there went part-time. The change in and of itself was not the issue. The problem was that the two receptionists who shared her job were gatekeepers of the worst order. They would not take messages. The final straw came when I was required to obtain a Working with Vulnerable People card as part of a voluntary job I was doing, Because I take medication I was asked to get a letter form my treating doctor who had prescribed it. There was a very short deadline for this information so I asked the receptionists if they could provide the general email address for the clinic so I could forward on the email. They flatly refused and said I had to mail it. This caused a lot of stress. I had to ask the ACT Government which issues the card for an extension. The thing that really upset me was how insulting – and arbitrary it was. I am a middle manager in the public service. I have access to email addresses for any number of high level people and in my almost ten years in the Service I have NEVER sent an inappropriate email to anyone. But I guess once you walk into a public mental health clinic you lose your identity a little. I knew I couldn’t attend this horrible disrespectful place. My only option was to go private – which costs me $310 each visit but is nicer in a load of ways.

So after the officious prejudice from the public system I started seeing a private doctor, This was fine until  few months ago when I called to make an appointment and got a recorded message saying my doctor had moved. There was a number which I called and got through to a receptionist in a new clinic who booked me in. They didn’t have EFTPOS set up so I had to pay the account after the fact when the receptionist sent me an invoice. They also didn’t have their diary online yet so I couldn’t book a new appointment. A couple of weeks ago I got quite unwell and needed a psychiatrist appointment. In fact  I had called the crisis team and they had strongly recommended I make an appointment. When I called the number I had got through on before, I got the sounds of a fax machine! I thought to call the number for the previous clinic. It gave me a new number which I called…..and got a recorded message saying the clinic was open form 9-5. But I called at 2:00pm! I tried two more times with no luck. Now I have no psychiatrist appointment, am kinda unwell and will be decidedly irritated if I have to get really unwell and go to hospital or some other nastiness because of logistics!!

So, maybe I am ‘making a mountain out of a molehill’ but it is a very real issue to me. It’s funny because when I have complained to the two doctors about this sort of issue I got the impression they had no idea how stressful and at times insulting it was for me. Maybe they thought it was part of my mental health pathology to be bothered by apparently small things.

Basically, out of all that annoyance to Jeanette, the message is to listen to autistic people and respect that if we say something is  bothering us – or if we can’t do it in words but explain through behaviour and evident stress – then please believe us. One person’s mountain is another person’s molehill. It isn’t ‘right’ or ‘wrong’ – it is just our experience.

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