What’s wrong with me?’ The trouble with pathologising Autism 

I’ll start by saying that this is not the Grand Theory of Jeanette or anything but is something I would like to put in the world for consideration and discussion.

I am going to write this from an Autism perspective than than a Disability one but I expect some of what I say here will translate across to other people.

I just came back form Sydney, where my autistic co-author Dr Emma Goodall and I launched what was both of our fourth published books. The audience asks lots of questions and were keen to know our expertise and thoughts on issues around autism. I talked about something I have never said publicly before but which was been nibbling the edges of my consciousness and autistic identity for a while. Yesterday Emma and I were autistic experts: People who share our knowledge with the world to help people support, respect, understand and relate to other autistics. Looking at myself, my life is accomplished for any human being.  I had to overcome all sorts of bigotry, violence and self-hatred and from that I made the life I have now where I win major awards and find a spot for almost every piece of writing I want to be published and also where I am fulfilled and mostly quite happy. My question around this is how is that possible if autism is just a deficit and a problem? If there is something ‘wrong’ with me, how come I’m doing so well? How then are so many other autistics doing great things and living fulfilled lives? Why does a mentoring program like the I CAN Network achieve such amazing results through empowering autistic kids and teens? If we were disordered and broken and wrong how is any of this possible?

Autism does tend to come with some big challenges, and while many of these relate to bigotry and bullying by others, some of them are more within us, like sensory processing issues and overload and shutdowns.

What if the difficulties we have due to autism are not in fact broken, disordered or disabling? What if they are like a different version of what non-autistic people experience as difficulties and stresses such as the angst of teenage crushes or being unable to focus on an idea or topic?

I say this because I see so many autistic people who can manage their challenges and embrace their great strengths. We often have amazing insights and skills. I spend a lot of my time talking to autistic teens and kids and they have so much going on in terms of sensitivity and thinking that I find it very hard to see things the way the DSM 5 does.  I look at my own life and I hardly see any autistic ‘deficits’. Rather I see my way of experiencing the world and how I have found strategies to manage my challenges.

What if the DSM 5 is actually pathologising things which could be seen differently. Do we have a manual for neurotypical disorder which talks about excessive gossiping and driving dangerously once hey get their license? I wonder if in the future autism will be a descriptor rather than a diagnosis? What if the world was neuro-inclusive and we are just part of wider human experience with our individual skills and difficulties? Maybe this would take the pathology away from autism. People have being saying for a long time about the great strengths autistic people possess. I actually think the pathology element is probably limiting people’s potential. When you are told from a  young age that you are different, have ‘social issues’ (whatever those are supposed to be. I socialise just fine with autistics and other neurodivergent people). Even in a deficits-based world autistics are achieving and reaching their potential and changing the world in their own positive ways. I just wonder if the world switched its view and saw us as a genuinely divergent ‘culture’ of our own that things would be so different for autistic people and those who love, care for, work with and learn from us.

I do not mean to ignore issues that autistic people have, but instead suggest that maybe clinicians and other ‘helpers’ could have genuine  understanding of the needs and experience of autistic people – kids and adults – and helped the person address those issues for what they were and not add a big, unnecessary whack of negativity about every other element of that person’s experience.

A couple of years ago I wrote a blog post which was supposed to be light-hearted about changing the  DSM autism diagnostic criteria from deficits to strengths. It remains by far the most viewed and shared of all my blog posts. But maybe it’s time to move beyond tongue in cheek to a real vision that a pathology isn’t the best lens through which to view autism. Imagine if instead of taking yourself or your child for a ‘diagnosis’ you enthusiastically worked through the descriptors and when you knew you belonged to the Autistic ‘team’ you celebrated with those you care about? This is definitely me thinking out loud (or out word!) but I think I prefer that world to being told everything you can’t do.

IMG_0446

Advertisements

Why I don’t like going to the doctor – Autism and healthcare

I have been driven to write this as I am undergoing investigations as to a potentially serious issue cased by a gradually increasing level of one of my meds over time. I’m not just talking about this experience because it is cathartic or anything, I am writing about it because it illustrates a lot of the issues autistic people can experience around accessing healthcare.

In my current problem there seems to have been two main factor at play. The first was my own difficulties with interoception – the ability to sense what is going on in my body. Poor interoception is very often a problem for autistic people and things like physical health symptoms and pain tend to be difficult for autistics to be aware of or to describe. So about a year ago I noticed that my hands were involuntarily twitching. It caused breakages of bowls, dropped phones and involuntary clicking of the mouse or keyboard when I didn’t want to. I had other symptoms and figured they were worth checking out as it seemed unusual. I had a GP appointment so mentioned these issues to my GP who, from her reaction, clearly had no idea what it might mean so dismissed it. In my mind I interpreted that this mustn’t be anything to worry about: I had consulted a health professional who wasn’t concerned, so therefore I had no need be concerned.Time went on and things did not improve. I was so tired – sleeping on weekends during the day which I have never done before. I figured it was just because I was getting older. The only thing which made me think I needed assistance was when I had lunch with some autistic friends in Melbourne, one of whom runs a program called Access Health Autism – more about that soon. I recounted the twitching and fatigue and she suggested that maybe I was experiencing neurological issues caused by my medication. I resolved to ask my psychiatrist about this next time I saw him, but when I had the appointment my poor little Jeanette brain was having issues so the appointment was focussed on that.

I still did nothing. I just figured my health would improve and I could get myself to work and impress my boss and my intellectual capacity was only slightly less than it had been in the past….

Thankfully last week I had a flash of inspiration. A relatively new symptom had started: shakiness. Pushing the button down to flush the toilet would cause tremors, as would coming home on a hot afternoon or doing the slightest physical exertion. This was actually something I know I had experienced it before. Last Saturday evening I felt odd in exactly the same way as I had in the past. I finally realised that was related to one of my meds. I put my medical two and two together and actually made four – an unlikely metaphor in my history of accessing health care! Being me – ‘I’m indestructible! Just give me work to do and a cat and I’ll change the world! – that person – made me supremely unconcerned. Here comes a key factor in accessing health assistance – the supportive words and concerns of trusted friends. I put my suspicions about the cause of my heath issues to my Facebook family. I have a number of friends who are medical practitioners and neurodivergent themselves tell me to do something about it because it could be serious. I made an appointment that afternoon with the after hours doctor. I was terrified she would dismiss what I said but thankfully she didn’t and in fact was so convinced of my self-diagnosis combined with m presentation  that the only good test she sent me for was levels of that medication! She called my on Monday night (yes, there was some inner panic in author-land!). The  medication level was high and had increased significantly over the past year.

There are lessons from this experience:

  • Autistic and neurotypical people communicate in a fundamentally different way. If a neurotypical medical professional assumes their words and non-verbal communication are going to be understood by every single patient they see in a similar way, this will be an issue. There is a solution to this and it is to provide enough information about autistic communication styles and also issues autistic people can have around accessing health care  to medical professionals.
  • Medical professionals often misinterpret the communication of autistics. This is likely to be significantly heightened for those who do not use verbal speech.
  • Autistic people often have a very limited ability to be aware of the sensations going on in their body. They may have a very high – or very low – pain threshold which can mean they miss out on care –  sometimes urgent care – because they don’t fit the expectations of the doctor.
  • This low level of interoceptive awareness also has an impact on the autistic person knowing whether and how soon they require medical assistance.
  • Assumptions, ableism and stereotypes can colour a medical professional’s understanding of the autistic individual they are treating.
  • This information is not just about having a poor experience with the GP. These issues can result in serious illness or injury not being treated for a variety of reasons. The end result of this can be death, chronic health issues or significant acquired disability. Recent research shows that autistic people have a significantly lower life expectancy than the general population.
  • Many autistic people (including me on a lot of occasions) have had bad experiences of healthcare settings – such as discrimination and trauma.
  • Medical settings, and particularly the emergency department, can be a horrific onslaught of sensory nasties, prejudice by staff and anxiety and panic.
  • Autistic friends or family are often a great place to talk with about your health concerns as they may have similar experiences to you and are likely to be supportive,
  • There is a wonderful service that I mentioned before: Access Heath Autism. For a reasonable fee the person running this, Kathy Isaacs, who is autistic and a nurse of many years experience, will do an extensive questionnaire with you and put together a report on your individual experiences and needs in accessing healthcare. She will also do a letter for medical professionals treating you. I am about to find a new GP (for reasons which are probably obvious reading this!) and will take the report Kathy prepared with me for my first appointment. Here is the link for Access Health Autism if you are interested http://accesshealthautism.com.au
  • Everyone has the right to appropriate, supportive health care.

And as to my own health issue…well I see my specialist today. I have thought about the best and worst case scenarios and understand from experience that the real outcome probably won’t be on one or other end of that scale. I am pleased to have a positive attitude, lots of strategies,  a loving family and friends and the world’s best cat (I’m slightly biased!). I’m hoping whatever the treatment, that I will get more of my energy back which would be wonderful. It has been a hard year for changing  the world having no energy and wanting to sleep all the time!

IMG_0129

What a difference 1826 days makes..5 years of trying to change the world

Just under five years ago I started writing a book – the second time in my life that I had done this. The second book was driven by a passion to make a difference. I had recently met a young autistic man for whom – for a variety of reasons –  his diagnosis had been a means to limit him rather than empower him. I told him I was autistic and had written a book and worked in the public service. His response was ‘That is not possible. You are lying.’ I was quite affronted by this response until I realised that in his world my life really was impossible. Speaking to this young man I discovered that he thought working was for other people and education was unattainable.

The book which I began in early 2013 was about building understanding and confidence around employment for autistic teens. Writing it directly related to meeting the young man I mentioned before. It was published and is called The Wonderful World of Work: A Workbook for Asperteens. Its publication marked a fundamental change in my life. Almost overnight I became passionate about making change. I started seeing myself as part of the autistic community, and none of the work I did was for personal gratification or recognition. I didn’t want to be rich or famous – I wanted to change the world.

The employment book was published and my outward focus on changing he world didn’t go unnoticed – I was asked to do a number of presentations, the most notable one for TEDx Canberra on autism and resilience. While the language and metaphors used in the TEDx presentation are a little dated (you will never hear me say ‘Autism Spectrum Disorder’ these days!), the message is sound. The more involved in the autism world I became, the more I learned.

That epiphany happened five years ago now and my passion shows no signs of abating. I’m not going to list my accomplishments because it is silly, unnecessary and kind of braggy. What I will say is that autistic people are generally very knowledgable about their passions and I am no exception. I now have four books published and another two on the way. I have spoken at a bunch of things and I have a wonderful network and community of autistic friends and colleagues. My life is very affirming and I am valued and respected. Every autism-related conversation I have gets stored in my memory and becomes part of my knowledge. The result is an increasing and nuanced understanding of autistic experience beyond my own. I am a lot more willing and able to talk to strangers about autism too. I  even wear a badge on my bag, and sometimes on my top, that says ‘Totally Flaming Autistic’ (I know, Ausome hey!)

I have noticed a number of things changing in the past five years. Some of the positive its of this are largely due to my fellow autistic advocates and activists working to change the world as well. Please note that these are observations rather than facts so they may differ from others’ observations. We do all approach the world from a  different perspective.

A lot of things have improved and a lot have remained about the same and some have got worse. And some thing are just different.

  • We have what I have almost aways experienced as an amazing, supportive community. May of us have found our tribe and our tribe is this vibrant, supportive thing (mostly). Autistic people who have felt alone and isolated increasingly have have the opportunity to connect with other autistics. There are toxic people in any community and I have had some bad experiences but mostly I have experienced so much care and respect and support from my fellow Autists
  • Typed communication has taken off in our community. For many autistic people, social media platforms are the best place for social interactions. We can share information around the world almost instantly and connect wiht there autistic people. There is also a great autistic blogging culture
  • While mostly supportive, sometimes social media groups or individuals on social media can be damaging
  • Views which were once outliers (e.g. the idea of autistic communication as a different culture or language) are starting to become more mainstream, at least within the autism ‘world’
  • I know a number of children who are autistic advocates, making videos or speaking up in other ways. This is one of my favourite things to see. I wish that was the case when I was a little Jeanette and think it is just wonderful that it is now. Being able to speak up and advocate demonstrates that a person has strong degree of self-acceptance and self esteem. These attributes are drivers of positive outcomes in childhood and adult life
  • Despite a load of efforts, bullying of autistic kids seems to have not improved much. If anything it is worse because bullies are online too so kids can’t escape bullying anywhere in their world. This needs to change but I don’t know how to go about changing it
  • Autistic parents are so much more visible. This is awesome. My mum was an autistic mum in the 1970s ad 80s.It was very different then
  • There are some backlash-type issues with things like kids responding with ‘That’s to Autistic’ to something they don’t like. This is a similar insult as ‘That’s so gay’ was ten years ago.
  • Charlatans are everywhere, selling dangerous ‘cures’ for autism and preaching damaging nonsense. I am unsure if this is more widespread than in the past or we are just more aware of it now. Whichever, there is no ‘cure’ for autism so anyone peddling one is at best selling snake oil and at worst hurting autistic people
  • There are still ‘legacy attitudes’ particularly in some autism organisations run primarily by neurotypical people. This can manifest as tokenism on Boards, programs which are based on damaging, invaliding practices (e.g. ABA) or abuse / criminal acts by staff members
  • The media’s concept of autism has changed somewhat but there is still a ways to go
  • Understanding that autism is a ‘thing’  exists in the wider community which it didn’t before. However this does not necessarily translate to more inclusion and respect
  • This is an odd one and maybe not too significant, but on online shopping and craft sites like Etsy and Redbubble there are lots of products under the search term ‘neurodiversity’.

IMG_6927

“Er, excuse me?…” Asking for help

 

One thing I say every time I give a presentation on mental health and autism  is how important it is to be able to ask for help when you need it. It is such an important part of maintaining health and wellbeing but is often an incredibly difficult thing for many us to do.

I have spent most of my life as a stoic – not even thinking that asking for help was an option, even when I was in dire circumstances. I didn’t give it much thought, I simply didn’t put my hand up for assistance from friends or family or health professionals or others whose job it is to take care of people. Sadly, while some of this was due to my base level of stoicism, I also had a number of experiences where health professionals had not exercised their duty of care to me. This would put most people off asking for help but for a person who avoided seeking assistance as much as me it resulted in me not even considering accessing that sort of help until the point that it was desperate. I also had a the issue that I had spent several years in institutions in my twenties. When I got myself a professional job, private health insurance and bought a home I felt like I was free and independent. In my mind, accessing mental health services was bound up with feeling like I was dependent and helpless again so I avoided it as much as I could. Despite having a diagnosis of schizophrenia since 1995, I stopped seeing a psychiatrist when I moved to Canberra and had a GP prescribe my medication. She was a lovely doctor but probably knew less about mental illness than me. She put ‘depression’ as my diagnosis despite the referral from my previous psychiatrist and the medications I take which are clearly to address psychotic symptoms such as those in schizophrenia and not depression.

There was a time in my life which changed my attitudes around seeking help and it was a critical one. I was very unwell with psychosis in 2010. I hand’t realised what was going on and had delusional thoughts that I was dead and in purgatory and I believed these to be real. I actually did ask for help – after several months and when I finally became aware something was wrong with my thinking. I contacted the mental health crisis team – but they weren’t very useful. They thought that because I was was still going to work that I must be OK. I was definitely not OK. Work is the very last thing I stop doing before I cannot function at all. So while I was indeed gong to work, I thought there was a ghost in my house trying to kill me and I knew I couldn’t say or write anything about the ghost as it would strengthen its power. I was confused and constantly terrified, I had visual hallucinators and was afraid to use any of the appliances or the shower at my home as I thought they were possessed and my house would fall down if  used them. But yes, I was going to work. The situation got quite dangerous and I was afraid this existence would be my lot for eternity. There is really only one step beyond that thinking and in my confused state it would have been easy to make that final choice. Thankfully I didn’t. The reason I didn’t was that I asked for help from a place that I had not gone to for help for over a decade – my parents. Being vulnerable in front of family was akin to admitting ultimate defeat in my mind at the time. If they had to come and support me through major mental illness the next step might just be starting again on that path to institutionalisation in my twenties. It was simply Not An Option to take that route.

This was the backdrop to a very important and difficult choice. In late 2010 I was so unwell that I called Lifeline. I can’t remember what I said but the counsellor asked if I was unwell or if someone was hurting me. When I told her some of the things which had been going on she told me to call my mum. She insisted I call my mum and said that if I had a daughter having such a hard time that I would really want to help. The counsellor asked me to promise her I would call my mum so I did. That was one of the most difficult and positive things I have done in recent years,

My mum drove to Canberra and stayed with me. Over the next couple of years when I was unwell her presence was a welcome ally to me as i fought my battles. Being vulnerable meant I got help and support and it actually strengthened my relationship with my parents and especially my mum. Asking for assistance from my parents was definitely the right choice.

There are a number of reasons that people – and autistic people particularly – struggle to ask for help. Some of these include:

  • Fears about losing your independence if you ask for assistance. This can stem from quite an black and white view of independence. Everyone needs assistance  at some point
  • Feeling you have nobody who would want to support you. This is really difficult although sometimes it is more based on perception than reality. It can be easy to feel isolated and to be isolated. Hopefully there is someone in your world you can reach out to. It doesn’t need to be a physical world friend – I have some very close friends I have made online and who would support me if I asked. And there are professionals who help. It is a different kind of caring relationship than with a friend of family member but it can be very useful too. I think one of the worst things I have experienced when I was socially isolated and didn’t have anyone I thought I could ask for help was how I interpreted my lonely life as me having somehow failed. This was not true at all. It is not a failing to be lonely. And it is not a static thing. I spent years with very few – if any – friends but recently I have made some good friends. Society has a lot to answer for with expectation around this kind of thing,
  • Feeling that being vulnerable  is a sign of weakness. Society can perpetuate this myth, and it is a myth. Asking for help is far from weak and can in fact be viewed as a sign of strength
  • Sometimes we simply don’t realise asking for help is an option
  • Sometimes people  – often parents – discourage us from asking for help from friends. This may be couched in terms of ‘bothering people’ or ‘imposing.’  This can be tricky but generally speaking, if someone is a friend and you need support they will be willing to give it. If you do unintentionally ‘outstay your welcome’ hopefully your friend will tell you and you can work to find solution to this with them
  • We can assume nobody will want to assist. The can make it even harder to seek support
  • Sometimes we have a bad experience of seeking help which influences our decisions in the future. This includes both family and friend support and that form professionals
  • Sometimes we don’t know who to ask.

The strategies that each person uses to enable them to ask for help will be different but some thoughts I’ve had include:

  • Remind yourself that all humans are are interdependent. We sometimes need support and sometimes we need to support others.
  • If someone offers assistance either around a specific incident or a broader, more open-ended offer then it is OK to accept it if you wish to
  • If you need to seek assistance from a professional who is not a friend or family member (support worker, crisis team,  police officer etc) remind yourself that this person’s job is to assist you and others who are in need of support. Be aware of your rights and responsibilities with these sorts of supports as they occupy a more formal arrangement with set boundaries and parameters. You may need to advocate  for yourself or have a family member, your partner or a trusted friend advocate for you as a lot of these services could benefit from a fair about of training and education on autism.
  • If you had a bad experience of seeking help from professionals in the past, be aware that this doesn’t necessarily mean you will have the same issue in the future, even with the same kind of service. However, it is wise to keep this in mind because at this point in history there is still a lot of unhelpful ‘help’ and misunderstandings with some service providers
  • Remind yourself that accessing help from someone – a family member, your partner if you have one, a friend or a professional – is likely to result in helping address your issues even if only in a small or incremental way. Even if it is hard to ask for help it can be really useful.
  • Be aware that people often like to support and help others. You asking them of help does not need to be an imposition on them. Imagine if it was your friend asking for help. You would probably want to assist them.

12418105_950319855049402_1300499308418724153_n

Why I struggle with ‘inspiration’ – A lot

The other day I was having a conversation with someone I have known on and off since my teenage years – before I was diagnosed. I was talking to her about my life and work. She asked me an odd question – ‘Do you work from home?’ I said that no I work in an office building with my colleagues. Then she asked how I got there. I told her I took the bus. Suddenly that terrible look came across her face. I’m not very good at reading looks but I usually I know this one all too well. She looked at me like I was a confused toddler and said ‘oh well done for getting the bus!’ as if of all my accomplishments that was the most impressive. The fact that the skills needed to do the work which I go to after I get off the bus are hard to acquire and that I am a highly valued employee in my workplace alongside very accomplished people was irrelevant. To this person I think the cogs in her brain which process autistic achievement may have seized up after the bus bit hence her not mentioning the work I do and all my other various activities. I was an impressive version of the autistic stereotype of not being able to use the bus. This kind of paternalism when applied to achievement by Disabled people is known is inspiration objectification – or as the late, great Stella Young aptly termed it ‘inspiration porn.’ Inspiration porn means calling people with disabilities inspirational on the basis of their disability. So my using the bus was inspirational because autistic people apparently find it hard. I think most non-Disabled people find relationships hard but I never go up to a couple that has been together for ten years and look up at them soppily and exclaim that they are an inspiration! (although after writing that I am a little tempted to…)

A non-Disabled person going to work or university or using public transport is almost never seen as inspirational but for those of us with pretty much any difference or disability, doing these things which are part of our daily life is somehow considered amazing and worth celebrating despite it being something we do anyway. It is like praising someone for eating breakfast!

One problem I come up against with this is that, as someone who overcame homelessness, addiction, abuse and violence and three years of prison – long story. Look at my autobiography for more details if you wish – that there are parts of my experience which actually are inspirational. I don’t mind when people compliment me on that as yes, kudos to me for being awesome – but catching the bus isn’t really up there with overcoming addiction!

I often find myself having to mentally wonder whether a statement about my life has been paternalistic  and inspiration porn-y or is a genuine appreciation for some impressive thing I have done. I find that usually the gut reaction is right – if it feels like ick, walks like ick and quacks like ick – it’s ick! People tell me I inspire them quite a lot these days and it always confuses me. Wouldn’t it be nice of condescending people hadn’t ruined the term inspiration for me and everyone else quite so thoroughly that I constantly question genuine respect and appreciation?

I think that most Disabled people probably find this stuff infuriating and insulting. It seems to come from the place that someone sees us as somehow lacking and broken so that anything we do is seen as inspirational. It is like we are children well into our adulthood. Like a performing seal – ‘oh she took the bus! How exciting, Her parents must be overjoyed’.

I don’t want to be a performing seal or an eternal child. I have a lot of work to do and don’t need to waste time explaining this issue to people. I have many, many things to say and do for which I need no ‘inspiration’ validation. In many ways I am a very strong person but this stuff makes me feel diminished and sad. It is an insult to me and flies in the face of pretty much everything I do and say in my advocacy work. The genuinely impressive things we do can get ignored, eclipsed by the attitudes which focus on the tabloid moment, the metaphorical dog playing football.

The stuff makes me and many others angry. I think it should make people angry. I have been thinking about prejudice and bigotry lately. I know some people who are not intentionally hostile at people from different groups but their bigotry comes out in other ways. The worst problem I see with this is that it is almost impossible to call someone on this and get them to understand what the problem is. It often makes little difference to say anything to them and just adds to my frustration and their feeling of being attacked when they ‘don’t hate Disabled people…’ Paternalism and inspiration porn seem to me to be clear examples of that. They are expressions of ableism and a sense of superiority  but not through using any noticeably overt hostile words. I would like for more attention to be paid to this covert bigotry because I for one am very sick of people discounting my Autistic and Disabled experience and focussing on what is essentially business as usual in my life and not realising the meaningful things I have done.

This is the link to Stella Young’s wonderful TED talk on the topic of Inspiration Porn. Please watch it if you get a chance. I would like it to be essential viewing for anyone working with or for us. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

IMG_6735

 

The distance between – letting go of the past and finally being free

I had a realisation today; a very good realisation. It centred around the idea that a distance of eighteen years was enough.

I think I probably need to fill in some detail here. Those of you who have read my autobiography which was published in 2006 will know that for around three and a half years, between the ages of 20-25 I was a prisoner. When I speak of people about this now they are kind and understanding – there were mitigating circumstances, they say. They explain that my sad career began because I had a boyfriend who was much older than me and a dangerous criminal, I was bullied in school, I didn’t understand consequences….while these things were probably all contributing factors I have to take more responsibility than this. Crime is a social issue certainly but there is always the element of personal choice. I made bad decisions, I hurt people – physically  and emotionally. My parents went through the kind of hell I can scarcely imagine and yet they stood by me after every stupid destructive decision and supported me when I eventually decided to make my life something less horrific.

My criminal history is now between 23 and 18 years old. When I decided to change my life, this concept of the distance in time was a constant presence in my mind. One year out and I had enrolled in university, but the man from the autism employment service who used to be a police sergeant told me he couldn’t work with me because I would go bak to my old ways. Then another police sergeant told me, a mere six months after the employment service person, that my dodgy days must be over – it was very conflicting to have such different assessments. Which was right? I thought it must be up to me. I carried that huge and rather useful sense of responsibility with me for so long, I was  – and remain – the epitome of ethical.

It was three years out and I was in university trying to change my little bit of the world for the better by learning and putting education and time between me and what I now saw as my ‘past’. It was five years out when I met Donna Williams / Polly Samuel. She told me I needed to write my story for all those parents of autistic young people in similar circumstances to where I had been so very very recently.

It was six years out when that book was published – my positive point of no return. But still every day that clock counted each minute between me and prison. I believed it wouldn’t take a lot for the Jeanette who I was terrified of to come back. I was afraid of my mental illness recurring and dissolving all those inhibitions and  barriers that I kept around myself as a fortress against the oh so recent past.

It was seven years out when I got my public service job. The pre-employment police check filled me with anxiety and the saving grace was probably that lovely book I had so recently written. I was amazed and relieved when my new employer said ’yes’.

It was ten years out and I needed to get a working with children card – more anxiety and soul searching. Between eleven and sixteen years out people told me it didn’t matter. It was ancient history. But to me it was almost clearly visible if I just looked down the years. Seventeen years out – last year – and I made a decision not to include the ‘where I came from’ slide in my talks in addition to  ‘where I am now’ slide. It wasn’t me but even then that history was still tethered to me by an invisible chain.

In September last year 18 years came around. I didn’t think much of it. Another day. The first time that I hadn’t devote the day to reflection and anxiety. And today I knew it was gone. My memory of that time is all that remains. I am not held down by it. It does not define me.I understand now what was meant when my friends told me it was ancient history. They were right but it took me a little longer to catch up to their understanding. After eighteen years I am finally free. It is lovely. I plan to enjoy freedom. It was hard won and not just by me. My path is an unusual one. Sadly so many people get caught in that web and never escape. There is nothing hugely special or impressive about me. I think the things which enabled me to escape that world were the support of my parents and a few others. My own discipline and determination helped – most social extroverts wouldn’t deliberately throw out their address book but in 2000 I knew I needed to do that because it contained people who were still stuck. I am quite good at willpower when I need to be. I have a fair brain but  think the key is that I do to blame or hold grudges. I never have really. Some truly horrific things happened in that time and sadly many of them were the result of actions taken by those supposed to be taking care of me. I have always said I live in the moment. Trauma will follow me but when it comes to specifics I can move past it quite well. I have never held onto hatred of anger for any of the things which happened. When they were no longer happening I moved on. The only anger and blame I held onto was against myself. That one took eighteen years to overcome. I am happy to bid it farewell.

Being free is lovely. This afternoon I realised the distance in time is no longer relevant and what happened in the 1990s is still there but I’m not. I finally knew I don’t need it and it doesn’t need me. It is as gone as a childhood toy abandoned in adulthood as no longer needed, relevant or interesting.

img_4611

An actual glimpse at the 1990s – 23 year old me and my Dad

‘Do you live with your mummy?’ and other paternalism problems 

I was actually asked ’Do you live at home with your mummy’ when I was 39 years old. The question was asked by a person I would have hoped would know a little more about autistic adults and our varied experiences of the world. The person asking me that was an employee of a large autism support organisation during a conference I was attending as a speaker. It was certainly an odd sort of question but sadly not unique or even all that unusual. As an autistic person I am quite used to these kinds of questions. They come from a place of paternalism. Paternalism is experienced by people from all sorts of groups. It is insulting to have assumptions levelled at me that bear no relation to who I am or what I do.  My main concern with this stuff is that it often betrays a power dynamic where the person making the statements thinks the other person is somehow  less valuable or worthy of respect than them. I live in a world where everyone has equal value and worth and so find paternalist attitudes offensive beyond my own personal annoyance.

Paternalism often seems to come from the view that autistic people are eternal children. In fact the etymology of paternalism come from a word for father. A father – in traditional terms at least – is viewed as the head of the household. They make the rules, they are where other family members go for wisdom and advice. The father goes to work and makes money. Simply put the father has the power. This is precisely what I feel when I face paternalism – that I am disempowered and seen as unimportant. I feel like I am a child being parented.

Paternalism also encompasses things like controlling and ablesplaining. Statements like ‘Are you sure you want to buy that?’ Doing things to ‘fix’  elements of an autistic person’s life which are actually working OK and  ‘helpful’ unsolicited translation of what an autistic person is saying to another person. These things are infuriating and frustrating.

Paternalism belittles our experience. I don’t know a single person who likes it. Acts of paternalism are like someone taking on an unwanted role of parent and wanting to help you by ‘looking after’ you when actually that isn’t something  you need or have asked for! It is a form of invalidation – you are not seen as your adult self but as somebody’s child. I am yet to meet a human being who has expressed an interest or liking for being treated paternalistically.

To the person doing the paternalism they are often missing out on you being who you are – your skills and attitudes insight and wisdom.

Another sort of spin-off issue from paternalism is one that if anything I like even less – tokenism. Sadly I have been on my fair share of committees where it is clear that I am there so that the organisation can tick the box and say they have autistic representation. It is not the box-ticking which upsets me so much. Organisations knowing it is a good idea to have autistic representation is not necessarily a problem at all. My concern is when autistic people are on those committees and their ideas and wisdom and insight and perspective is ignored. Arrangements where autistic representatives have no say or when they say things are belittled or ignored – That is what I think tokenism is. It is really counterproductive. I think it is probably worse than having no autistic representation that having a token person on committee who is ignored and only has the role for the sake of ticking the box. It really isn’t that hard to include people’s views so it surprises me how often this still happens. If we are in a position of influence on a committee we need to be included and what we have to offer appreciated otherwise it is just a means of an organisation wanting to look better in the community. That is not something I condone and for the autistic people in those situations can cause a lot of stress and inner conflict.

Is there a solution to all at of this? Yes there is and it involves listening and respecting autistic people. Instead of assumptions of incompetence and unhelpful stereotypes, pease see us as equals – friends, colleagues, fellow travellers in the funny old world of ours. Don’t assume – ask and unpack and consider your attitudes if you have an issue in this area. If you approach another human being through a lens of thinking you are somehow more mature and ‘better’ than them you have almost certainly lost that person right away. Instead approach others with an open mind and empty your mind of preconceived notions or success or value or worth or maturity.

IMG_1751