Today I had a particularly unpleasant exchange on Facebook with a  woman who said my use of the term ‘autistics’ was ableist. I responded by saying that many autistic people us the term Autistics to describe our culture, our tribe. Unfortunately it got less pleasant and blocking  wasn involved.… Anyway, the upshot of this is that it is another chapter in the thread of my life involving  difficult interactions with people autism and identity.

Apart from the feeling of being attacked, my issue with the exchange today was the concept of someone who isn’t me telling me how I should identify and how I should described my tribe.

Telling people how they should identify is sadly quite common. To my mind it is on the list of Highly Uncool Things to Say To An Autistic Person. The most common issues is around ‘person first’ versus ‘identity first’ language. Person first means saying ‘person with autism’ and identity first is saying ‘I am autistic / Autistic’.  Autistic people choose to identify in a number of ways. In my mind, however a person chooses to identify themselves is correct. A person’s identity is their own. It is nobody’s right to tell another person how they should see and describe themselves. If I want to use identity first language and you want to use person first, I do not have the right to tell you that how  you choose to identify is ‘wrong.’

In my own experience, my Autistic identity is a hard won thing, so people telling me how to or how not to identity  goes deeper than the simple irritation of it. I feel as though they are questioning my right to be who I am. After spending so many years ‘acting’ and fitting in with different, often harmful groups in order to feel like I ‘belonged’ socially because i hated myself so much. I don’t particularly appreciate being told my identity is ‘wrong’ and I should instead identify how they think I should.

It is like someone saying ‘I don’t think you should be called Jeanette. You should call yourself Brenda.’ It is offensive and ableist and just plain rude to tell an Autistic person how to view their own identity, or anyone from any other group. The only person who should get to decide on how they define themselves is the person themselves.  I honestly can’t understand why anyone would question this.

Oddly enough, in my experience, some of the people that have the most difficulty understanding the need of identity to be defined by the person it relates to are people who care about inclusivity. They often find ‘I am Autistic’ challenging because they were taught about being inclusive and not ‘defining people by their disability’. I have had many conversations in this vein – with varying degrees of agreement and resolution. I would say to people in that situation  – and everyone – to be guided by the persons; own description of their identity even if you don’t like it. It is their ‘them’ not anyone else’s.

I think for me, the main reason I say ‘I am Autistic’ is that autism is an integral part of my character and my being. It would be as difficult to seperate my autism from who I am as separating my love for cats or my creativity. It isn’t even that ‘Jeanette without autism’ would be a different me. She would simply not be me but a seperate person. I have fought for years against ableism and bullying and discrimination and self-hatred and insecurity to become the proud Autistic woman I am today. So please don’t tell me how to identify. It’s my identity, my name, my me.

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 resonate more broadly.

I just came back from 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 quite 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 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 deficits and problems? 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 from within ourselves, like sensory processing issues and overload and ‘shutdowns’.

What if the difficulties we have due to autism are not in fact related to us being 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 and utilise 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 extremely hard to see things the way the DSM 5 diagnostic manual 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 very effective strategies to manage the challenges I face.

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 taking risks when they are young? 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 talking 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 various 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 a genuine understanding of the needs and experience of autistic people – kids and adults – and help 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 5 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 and satire 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.

 

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!

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’.

 

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.