I’m a Board Director!

Yes, it’s true.

I’m on the Board of Governance of AMAZE.

And I wonder if I am experiencing internalised ableism or imposter syndrome or both because part of me thinks it’s funny. Although, I take the position very seriously and it fills me with trepidation (because I now represent autistic people on the board of an autism organisation) part of me finds the appointment of ME to the position amusing.

Don’t misunderstand me, I am very knowledgeable about autism and being autistic (just check out my old blog posts and follow me on twitter and you’ll see that disability and social justice are my special interests) but I still feel like a child on the inside (that’s the internalised ableism bit).

Although, my overall skills have improved due to practice and life experience, I still have the same essence of me that feels child-like. I still daydream, I giggle at my sons jokes and unexpected observations, I like games (board games, kicking a football or shooting hoops) and watching our pet chickens roam around our backyard simply being chickens. Sometimes, I still jump off a swing or climb an obstacle with my nieces and nephews, at a park, in fact often I do. When I visit my nan, I want to lie on the floor instead of sit in the chair while she talks and on long car trips I put my feet up on the front passenger dashboard. I forget that I’m forty and that’s unexpected behaviour at forty although, more-and-more, I am aware of what’s expected but I just disregard it because I’d much rather do what I like. I think to refer to those characteristics as child-like is prejudiced. It’s not child-like, it’s being carefree and my sense of what’s comfortable and fun is different and uncomplicated. I am not a child, I am an adult who doesn’t conform to adult culture.

Then, there is the fact that I need more guidance to accomplish tasks successfully. A perfect example is how I almost always get lost (with the exception of routes I take daily because they can be completed without conscious thought). I watched the movie ‘Finding Dory’ with my children, a few days ago, after reading this piece on how the movie covered the themes of disability surprisingly well. After watching it, I realised that Dory and I, although having different disabilities, had a similar need for a lot of support with following and remembering directions. Children need more help than adults usually, so there is the risk that I could be thought of as child-like (which would be ableist) because it is not acknowledging the fact that adults require supports too. Disabled adults need more support in an environment that does not follow the guidelines of Universal Design.

After writing this (which has served as self -exploration), I realise that laughing in disbelief, over my appointment to a Board Director position, is actually very ableist and when you are ableist against yourself (internalised ableism) it automatically has flow on effects to others. I apologize for that.

So now it’s time to redefine what it means to be a Board Director and all those other titles that have long been held by primarily privileged non-disabled adults so that people like me, don’t think that positions like those, are not for people like us and that they do accommodate our needs.

 

Autistic voices

Our state autism organisation is called AMAZE. According to their website “Amaze is a member-based not-for-profit organisation and is the peak organisation for Autism Spectrum Disorder (ASD) in the state of Victoria. Amaze represents around 55,000 Victorians who have ASD and work for the benefit of all individuals and their families and to promote better understanding of ASD in the general community.”

To promote a better understanding of autism in the general community is a massive task when there is so much misinformation about it. The AMAZE Facebook Page posts are often followed with passionate comments about the sorts of ‘awareness’ articles they should and shouldn’t post from neurotypical parents of autistic children versus autistic people. A lot of the comments reflect ignorance and fear. The debates are predictable and painful.

Some neurotypical people, such as parents of autistic children, believe that autism is the worst thing that has ever happened to them or that it creates undue stress on their children so they wish their child didn’t have it and they would embrace a cure. Meanwhile, autistic people who embrace their autistic identity, both their strengths and vulnerabilities, feel that their disability arises from a lack of acceptance and inclusion. Not only do autistic people feel that they are undervalued and therefore discriminated against but that they are a likely target for eugenics through the search for a “cure”.

AMAZE will never please everyone but it should be clear which path favours social justice. Unfortunately, social justice has never been an easy path to take. If AMAZE chose to please the majority (a numbers game) they will be catering to neurotypical narratives of autism, which can often be ableist and unintentionally harmful to autistic people through stigma. If they chose to please the minority they are doing right by disability advocacy guidelines “Nothing about us without us” but they will lose popularity and likely donations to further “promote a better understanding of autism” (ironic).

We can support autistic people AND their families while being respectful to autistic people but the task of helping the neurotypical majority to see that seems enormous. It’s almost as though you need to give people a degree in autistic experiences to understand why this is necessary.

Perhaps AMAZE has decided to tackle the difficult path with their recent attempt at doing something different for the World Autism Awareness Day (autistic advocates would prefer the day to be called ‘Autism Acceptance Day’). Instead of the usual march, sporting blue shirts with the latest prevalence numbers printed on them (we are not a number), AMAZE chose to call for autistic people to video record their stories and send them in. The stories were edited and condensed into a 17 minute movie shown at cinemas in Victoria, on the 2nd of April and available to be watched online or by purchased CD.

The initial call was for autistic people to contribute but a few family members chose to speak on behalf of their child/children from their neurotypical perspective and how it affected them as carers, which was particularly unfortunate in the cases where the children were portrayed as a burden. However, the broader message of acceptance was clear enough for those willing to listen.

I chose to watch the movie online, in the comfort of home, with my autistic sons so that I could expand on different concepts that were raised. Much to my surprise and my boys delight, part of my video recording featured in it (at 14:03 min)*. You can view the edited movie and the individual videos at www.spectrospective.com.au. I’m curious to know if you found that it helped you to understand autism from the lived experience and made you question the common narratives of burden, numbers and cure.

*Although my boys were keen to contribute a video recording of their own, my husband was concerned about their privacy, which I respected, so they did not contribute.

The stigma of mental illness and violence, a personal account

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My eyes are not standard-shaped, I’ve worn glasses since I started school. My optometrist referred to my eyes as egg-shaped but my mum insists that they are almond-shaped. I’ve got my fathers eyes and now I see that my almond eyes will become blood-shot and my eyelids will puff up and redden with age. He was attractive in the few photos that my mother kept of them after she left, but time and circumstance had worn him down; nights without a roof over his head, poor nutrition and health care.

He said “You didn’t want it to be me, did you?” I quickly denied it but he was right. I felt instantly ashamed that I had not wanted him to be the one, for those few minutes. I had seen him standing there at our prearranged rendezvous point, on the steps of the city post office. In that bustling place, he was the only person standing still as if waiting for someone but we hadn’t thought to describe each other and he did not look like my father so how could I know. I stood frozen to the spot, scanning the crowd wondering if my father would turn up, trying not to make eye-contact with the nervous unkempt stranger 5 metres to my left.

On the phone, my father had sounded very well-educated (as he is). The handwritten letter that he left in my mailbox revealed that his writing and grammar were beyond fault but he was shabbily dressed, a result of either his poverty and/or disinterest in appearance. At least he looked warm, I was glad he was not cold. I had come straight from my temporary locum job, which had brought me interstate to where my father lived. He commented on how much he liked my coat and how smart I looked (dressed in my work clothes).

He tried to explain his absence from my life but his explanations didn’t add up. My father had a long history of mental illness, of which he appeared to be in denial. He told me he thought the doctors weren’t telling him the truth about his health. Perhaps they didn’t know the full truth, perhaps it included autism (like me and my sons) but I did not know about autism back then.

He invited me to his one-roomed unit for dinner one evening, he had prepared a very hearty stew. He only had one set of utensils to eat with so he gave me the fork and he ate with the spoon. I tried to make conversation, I wanted to know what he thought about the world, I wanted to know if we had things in common but my conversation skills were very poor and hindered by unspoken truths.

Then, he suggested we go on a road trip together to Port Arthur as he had always wanted to go there. The only thing I knew about Port Arthur was that there had been a horrific and well-publicized massacre there several years earlier. The Port Arthur massacre was carried out by someone (I chose not to use his name because of the danger of affording murderers celebrity status) who was reported by the media (incorrectly, although I didn’t know it at the time) to have had Schizophrenia. I became very nervous about the idea. Why did he have to choose that place of all places?

Actually, I was even nervous just going to his place for dinner. I was aware for many years that my father had been diagnosed with Schizophrenia so I was very interested in finding out more about it when I was younger. I had read several books from libraries about the condition and remembered reading somewhere that people with a diagnosis of Schizophrenia could become violent to those closest to them.

Even though my family assured me that my father was never physically violent, he was essentially a stranger to me and fear was always very close to the surface for me; I couldn’t help feeling concerned for my safety. My fear was also fuelled by an unfair bias informed by popular culture against people with mental illness. I quote the following from the Editor’s summary of a very informative review of the literature (Fazel, 2009) which confirms that the assumption that Schizophrenia predisposes a person to committing violence is misleading:

‘These findings indicate that schizophrenia and other psychoses are associated with violence but that the association is strongest in people with substance abuse and most of the excess risk of violence associated with schizophrenia and other psychoses is mediated by substance abuse. However, the increased risk in patients with comorbidity was similar to that in substance abuse without pyschosis. A potential implication of this finding is that violence reduction strategies that focus on preventing substance abuse among both the general population and among people with psychoses might be more successful than strategies that solely target people with mental illness.’

It is not mental illness but drugs and alcohol that predispose violence. My father did not appear to be to have drugs or alcohol in his life from what I could observe and no one ever mentioned drugs or alcohol as part of his history so my fears were completely unfounded.

In the article, Discussing evil: The problem of “Us” and “Them”, Soraya explains how we enable ourselves to feel more secure and safe by attributing violence to a certain type of person such as someone with a mental illness; those we refer to as “others”. We can then be safe in knowing that no-one we choose to associate with could do something like that and that if we could just cure or quarantine those “others” that present a threat to “us” then we have an easy solution to the problem. But this is firstly not the case and secondly just encourages stigma and violence towards people with a mental illness or other labels.

My father was probably aware that I wasn’t comfortable with the idea of going with him to Port Arthur (possibly my face went pale and conversation halted) even though I did not directly say no. I feel that this unspoken rejection and prejudice may have informed his ensuing behaviour.

The next time I tried to contact my father he did not answer his phone, I went to his unit and knocked on the door but he did not answer. Instinct made me think that he was home. I called his phone from the door and he answered and said he was too unwell to come to the door.

A couple of elderly women who lived in a unit downstairs had heard me knocking on his door. They asked me who I was and if they could help me. I explained my concerns and they gave me the number of his case worker who assisted all the residents.

The case worker informed me that he had a diagnosis of Paranoia and Severe Depression, there was no mention of Schizophrenia. She asked for my contact number but my locum job was almost over, I couldn’t see how I could support him from interstate and it seemed he didn’t want my support anyway. I offered my Godmother’s number instead (my aunt, his sister).

Fifteen years later, I had lost all contact with my father but my exploration of my past had reignited a desire to contact him again. I wanted to share with him that he had grandchildren, I wanted to share what I knew about autism and see if it could help him to come to terms with how he relates to the world (like it did for me).

I felt that if my father wanted support (which he might not) that I was in a position mentally and financially to help him. I wanted to try to connect with him again. This time I thought I could do better, this time I had better social skills, this time I had more life experience, this time I had more to offer him.

After many phone calls, I was given a likely address for him and I wrote him a letter. I had my husband edit out anything that might scare him off (too honest, too weird etc.) and I included photographs of my sons and I.

I have not heard from him, I’m not sure if I ever will but I feel a weight removed from my shoulders. It was also an unspoken apology for unspoken feelings and prejudice.

For more information on the myth of mental illness refer here and here.

For an interesting article on schizophrenia and identity refer here.

“My dad is NOT a scientist!”

My boys were at first disbelieving and then quite distressed when I confirmed that their dad was a scientist*. Jeremy and Damian’s experience of scientists extended to their favourite superhero TV shows where villainous or well-meaning scientists created weapons and mutant monsters for the superheroes to defeat.

When Damian began to cry, we realised the extent of his misunderstanding and had to do some quick talking to reassure them that his dad’s life was not in danger nor was he putting the lives of anyone else in danger**. They still don’t entirely understand what being a scientist means. Every now and again, Jeremy will say goodbye to my husband in the morning and adorably add “I hope you discover something new today!”

Things don’t happen  so quickly in an average scientists lifetime. Information that one scientists gleans from his or her life’s work may only represent one tiny, although essential, piece in a larger puzzle. The puzzle itself being one tiny piece in an even larger puzzle, which somewhere along the way, with input from many other scientists and professionals may eventually lead to an everyday application that a lay person would recognise.

Perhaps that may seem like an insult but its not. Without scientists we would still be back in the Stone Age. It is just a very slow and laborious process with very little new revelation occurring as a percentage of all that is tested.

Hugh Walpole had this to say about science “In all science, error precedes the truth and it is better it should go first than last.” But it’s not really error at all, it’s investigation. Disproving things is an important step in the process. This should come as no surprise to any self-respecting scientist because it is standard practice to approach a theory from the angle of disproving a null hypothesis. Mind you, it takes more than one study to prove (or be unable to disprove) something does what it claims to do.

As Heino Falcke explains in his blog post ‘Science in the era of Facebook and Twitter- get used to it’ consumers need to be wary of the latest headline and scientists need to be wary of the fallout from being too hasty to promote their work.

The greatest bane of my existence (I may have watched a few too many superhero TV shows too judging by the sensationalism in that expression) is the host of misinformation on the internet about health and nutrition and I covered this topic in more detail in an earlier post. Of course, the same can be said for the science behind autism too when so many theories (refer here for more information) and therapies are seemingly accepted as truth (more here). I refuse to mention the ‘therapies in question’ because just mentioning them gives them more exposure that they do not deserve.

As Heino Falcke so eloquently puts it in his blog post (mentioned earlier) “Scientific truth is not the outcome of a single Eureka moment but of a long sociological process and hence it is subject to all human deficiencies”.

The moral of the story is this: Proceed with caution (don’t blindly follow) when considering a new procedure or even when adopting a point of view or making an assumption about someone with a diagnosis. Refer here for some guidance on how to evaluate online resources.

Notes:

*In an earlier blog post, I have briefly referred to my husband as being a teacher (I’m intentionally vague about my husband because his privacy is important to him). To clarify, he has both a teaching and research role.

**My husband wanted me to write: “Although, my husband gets upset he is not a ‘mad scientist'” but I didn’t think it sounded as funny coming from me.

Hoodwinked in health

This is a topic I’ve wanted to write about for a very long time now. But it is such a delicate topic that I have been too afraid to attempt it until now. It’s not politics, it’s not religion and it’s not even football.

Everyone does it these days. Everyone talks about it. No, it’s not sex and most of you will now be very disappointed; some of you relieved. It is Complementary and Alternative Medicine (CAM). Well, that was an anti-climax and it can hardly even be called ‘alternative’ anymore now because it is so common it seems to have become therapeutic norm.

What is CAM?

CAM includes: naturopathy, chiropractic, aromatherapy, homeopathy, reflexology and Chinese herbal medicine among many others.

The National Center for Complementary and Alternative Medicine (NCCAM) defines CAM as a group of diverse medical and health care interventions, practices, products, or disciplines that are not generally considered part of conventional medicine.

When I was young I was fascinated about the story of travelling ‘snake oil’ salesman. Apparently, in the 19^th century there existed a popular product based on snake oil that fraudulent salesmen promoted and sold as a ‘cure all’ to vulnerable audiences. They moved from one township to another quickly enough to avoid any unsatisfied customers. I wondered how anyone could become so easily convinced to buy such products and naïvely assumed that people would be too aware to be fooled by that sort of thing now. I was wrong. The snake oil salesman has evolved with us and adapted his products, terminology and his sales techniques. He is alive and well in the guise of some CAM practitioners.

Many years ago, I completed a Bachelor of Science at the University of Melbourne and a Masters of Nutrition and Dietetics at Deakin University, so not surprisingly what concerns me most about CAM practitioners is their nutrition advice.  We don’t just have fad diets now but we also have food prejudice.

Certain food groups and nutrients have become the number one enemy. I don’t know what it is about humans but we have an intense desire to pit ourselves against enemies and the person we are most likely to trust is the person who points out our enemies, the snake oil salesman has exploited that. Milk and wheat are two of the most hated foods at the moment. Perhaps ‘gluten’ should have been called ‘slimmen’ and ‘casein and whey’ should have been called ‘healin and lite’.

Do you know how perplexing it is to me that after having completed my five years of tertiary education to become a Dietitian, even my own sisters have made appointments with naturopaths and followed their diet advice to varying degrees?

Friends, family and strangers alike have often recommended certain diets to me or told me the evils of a specific food group, food or nutrient even after or especially after I have disclosed my dietetic background (something I don’t enjoy doing because it only encourages people to promote their own beliefs about food). Beliefs; not facts.

I am not denying that people can have allergies or intolerances to specific foods or nutrients but unfortunately many people who have been told by CAM practitioners they have allergies to certain foods are not allergic to them at all. It is not uncommon for false diagnoses of allergies to be given by CAM practitioners who use unproven allergy tests. High-allergen foods are not intrinsically unhealthy (if you are not allergic or intolerant to them) so restricting their consumption is of no benefit and in some cases may  pose nutritional risk.

This is about the point where people feel compelled to write about how their CAM practitioner changed their life, which will only make me feel like banging my head against a brick wall. Why do I feel that way? Because as wonderful as you might feel right now, I can’t help thinking that you have been hoodwinked like so many others and in being hoodwinked an injustice has been done. It’s like the story about the emperor’s new clothes, only I don’t think anyone deserves to be deceived with regard to their health.

Over half of all Australians report using CAM treatments¹ and less than half of those who use CAM treatments tell their General Practitioner (GP) about their use of CAM¹. Concerns regarding CAM based strategies relate to the fact that they are usually not evidence based even if they claim to have scientific proof and can be used to replace known effective treatments, provide harmful side effects or financial burden for no real positive end result².

Did you know that if someone gives you a pill, which you believe may be capable of relieving symptoms you are experiencing, it may actually work even if it is made entirely of sugar? It’s true; it’s called the placebo effect.

Besides the placebo effect there are so many statistical and scientific factors that need to be taken into account when evaluating studies in order to be sure that something is in fact doing what it is claimed to do. Not to mention that there needs to be a plausible explanation for it to work.

I no longer practise as a dietitian because I realised pretty quickly that I don’t have good social or sales skills, something that perhaps works in favour of the evolved snake oil salesman. Many people with scientific and academic strengths that have enabled them to be accepted into mainstream health and medical studies and professions have their weaknesses in ‘bedside manner’ or social skills. Meanwhile, the snake oil salesman says all the right things, inspiring you, empowering you and reassuring you that you can escape the ills of western civilisation by following a few simple steps.

I’m sure that some CAM practitioners believe in what they are doing (practitioners can sometimes be fooled just as easily as the consumers) and perhaps some might even admit it is not based on established science but that it is a belief system based on a vitalism* but I doubt any of them says “The only scientific evidence for what I’m about to do is anecdotal evidence, which is probably a reflection of placebo effect, confounding factors and statistics and you should let your GP know about all the supplements I am about to sell you in case it interferes with any of the medications you have been prescribed” because they wouldn’t be practicing for long.

I really think that people need to be making smarter, more informed choices with regard to their health. You only have one body, and making health mistakes by trusting the wrong practitioner can be costly in a physical, psychological and financial sense.

Over a 12 month period in 2004/ 2005 Australian’s spent 1.86 billion dollars on CAM products, 1.73 billion dollars for CAM practitioner visits, and 0.54 billion dollars for other CAM-related items¹. No doubt that figure has increased substantially in the past decade.

The best advice I can give is to recommend that you make sure you understand how any particular treatment is meant to work. If a treatment doesn’t make sense, sounds like a fad diet or sounds too good to be true, ask for clarification and evidence of it’s effectiveness and don’t be afraid to do some research on it yourself. Don’t sign up to or pay for anything until you have looked into it further. The following link provides valuable advice on how to be an informed consumer and how to find and evaluate online resources.

It is also important to tell your GP or medical specialist when you are undertaking a CAM treatment because they are not without risks; they may result in harmful or unwanted side effects. If you are interested in a particular CAM treatment your GP should be able to access and assist you to evaluate information on it also².

Don’t be afraid to ask your GP about recommendations they have given too, I do. I’ve actually found that most doctors enjoy talking about things in greater detail. Of course, there is always the exception to the rule and that is why getting a second opinion (seeing another doctor or medical specialist for the same issue) is commonly done.

A brief note on CAM and Autism

A very good review article that I came across recommended trying (with proper guidance and/or training) only three out of nineteen commonly used CAM treatments for people with autism after evaluating the scientific evidence available³. For interests sake they were melatonin (for sleep problems in children with autism), multivitamin/ mineral (for those with a limited diet and/or poor appetite) and massage therapy³. Feel free to do further research on these treatments if CAM is of interest to you. Otherwise, there other more conventional approaches to supporting people with autism, some of which are briefly covered on my post on communication and behaviour.

As mentioned previously, it is important to tell your GP or medical specialist when you are undertaking a CAM treatment because they are not without risks; they may result in harmful or unwanted side effects.

*Vitalism (Oxford dictionary): The theory that the origin and phenomena of life are dependent on a force or principle distinct from purely chemical or physical forces. Examples include Reiki and qi.

References:

1. Xue, CC. Zhang, AL. Lin, V. Da Costa, C. Story, DF. Complementary and alternative medicine use in Australia: A national population-based survey. The Journal of Alternative and Complementary Medicine 2007; 13(6): 643-650
2. Myers, SM and Johnson, CP. Management of children with autism spectrum disorders. Pediatrics 2007; 120: 1162-1182
3. Lofthouse, N. Hendren, R. Hurt, E. Arnold, LE. Butter, E. A review of complementary and alternative treatments for autism spectrum disorders. Autism Research and Treatment 2012; doi: 10.1155/2012/870391