The month of April

At the end of Autism Awareness Month 2019, it is an apt time to reflect on the rationales behind the ongoing need for awareness.

Functioning language continues to proliferate, both officially and unofficially. Certain health professionals continue to uphold that a child on the “high” end of the spectrum has a better chance at a “normal” life compared to the “low” end. Certain parents beg to highlight that their autistic child is “high functioning”, a differential from the supposed “low functioning” children. How did such language become to be widespread and to some extent, even accepted? This is where I believe the DSM-IV has done more harm than good for the autistic community. While “high” and “low” functionalities have never been official language in the diagnostic criteria, health professionals and parents alike have equated a diagnosis of the formerly known Asperger’s Syndrome to that of “high functioning autism”, and conversely, equated a diagnosis of Autistic Disorder to that of “low functioning autism”. What really differentiated these diagnoses? IQ and verbal ability, again supposedly. The autistic community today strongly refute the use of functioning language as well as the perpetuation of distinction based on IQ and verbal ability alone. We are each to our own an individual. We each have strengths, and weaknesses, and everything in between. We make up a whole spectrum, but we each fluctuate from day to day, as our coping defences wax and wane, as support services become available or withdrawn, and as worldly triggers strengthen or defeat us.

Many in society continue to assume a deficit model of autism. This can be represented by what used to be known as “Autistic Distrubances of Affective Contact”, termed by the late psychiatrist Leo Kanner. This would be later referred to as signs of “classic autism” once the differentiation of “Asperger’s Syndrome” was made by the late paediatrician Hans Asperger. The problem with the deficit model of autism is that it assumed ALL autistic children could not relate to ALL people and objects. Ask any adult autistic group today, and you would hear a very different outlook, one that explains our inability to relate as being due to the inflexibility and unwillingness of society to accept us. When you put like-minded autistics together, then there is no social wall. Given a common interest, we can converse for hours and we suddenly feel alive with the wish, and even need, to socialise. Another aspect of the deficit model of autism which is harming many autistics is the assumption that communication must be in the accepted verbal form. An autistic adult once said: “Just because I don’t speak doesn’t mean I have nothing to say.” (I CAN Network, Humans on the Autism Spectrum 2018). It is only in recent years that society has begun to accept and even normalise other forms of communication. Some autistic individuals rely on a communication program via a computer device. Others like me express ourselves 100% better in written form than in speech form. Others still are constantly observing the world and processing all the stimuli (the inputs), yet struggle with expressing an opinion on what they see (the output). One talented autistic expresses their understanding of the world through art. What a beautiful spectrum of individuals with so many innate gifts that are often overlooked.

What else can be learnt about autism this month? Diversity and acceptance. In multicultural Australia, we have already come a long way in respecting differing beliefs and cultural backgrounds since the “White Australia Policy” of more than a century ago and the “Assimilation Policy” of more than ½ a century ago. Why is it then that we have groups within society whom still fear disability? A top marketing priority for anti-vaccination groups is the (long debunked) myth of the MMR vaccine causing autism. With some parents fiercely believing that it is better for a child to be dead from measles than to live with autism, it is little wonder that actually autistic children and adults question their worth when confronted with such triggering content. We are each born autistic, and with self-acceptance and a support network, hardly any of us wishes to change anything. Awareness of autism is the beginning stepping stone towards understanding the fabric of facts and the kaleidoscope of personalities within the spectrum. History has been corrected. There are notable advocacy groups now to represent what autism is. We are now out and proud, and no longer locked away from society either voluntarily or involuntarily. With awareness then comes acceptance. To accept does not equal to having to agree. We disagree on political parties to vote for and which religion to base our lives on. As a society, we too can accept disability and difference without having to agree with all that it encompasses. I can accept that another individual disagrees with the amount of social support I require, but they too can accept without judgment that I require these support services. Goodbye Autism Awareness Month for another year and counting.

The Price of Happiness

It has been almost 2 years since I was prescribed and commenced on antidepressants. Not only have they protected me from trauma flashbacks, I’ve also been able to gain full time employment again and function to the best of my abilities. Here is a cheek in tongue piece I wrote soon after I first began taking them:

“Any other questions? No? Then that will be $18.20 thank you.” At first I thought I had heard wrongly. Surely, a 6 months’ supply of antidepressants couldn’t possibly just cost $18.20 even if it was a generic brand? Nope, that was how much it actually cost to help make me feel better for the next 6 months, or as I aptly put it to myself at the time: the price of happiness, the antithesis to the darkest pits of depression.

I have never taken medication for depression before, even though I have had a few major relapses over the years and short decades in which I have walked this earth. I was taught as a child that no medication can ever surpass the strength of a fighting human body and its spiritual mind. To take medication for a physical illness, well that was somewhat excusable if your body was frail and it could no longer fight the good fight when your bacterial or viral load became too much. To take medication for a mental illness? Why, that was absolutely unheard of. You were either crazy or normal, with asylums and institutions reserved for the former group of the population, and a functioning society for the latter. Needless to say, it was a pure struggle just to make it to adulthood, and at one point, to not have taken my own life.

Medication stigma is real, and continues to this very day. Well-meaning friends and family will often try pointing you to a more “natural” alternative because frankly, who didn’t believe that mental illness is a poison on the body, let alone what lab products you would possibly want to ingest. See, if exercise alone could cure depression, then I’d never have had it in the first place. Acupuncture? Yikes, as if I didn’t grow up with enough of a needle phobia. Vitamin supplementation? Yes, I do take ones for what I am deficient in, such as iron, but the rest would just contribute to a very expensive toilet content. I like to think of alternative medicine as a supplement to more evidence-based therapy, rather than a treatment option in its own right. The combination of antidepressants and psychotherapy has delivered the strongest therapeutic evidence in peer reviewed research, and indeed sometimes, one would need both.

There is no shame for not having been made and born in perfection to cope with this world. Autistic individuals are already born the way we are, and for many of us, anxiety and depression are common comorbidities throughout our lives. My own anxiety is mostly situational rather than generalised, and I have learnt various strategies to cope with the associated panic and physical symptoms should they arise, including: mindfulness training, deep breathing, diet control and bowel regimes. For other autistic individuals, their anxiety is their most debilitating issue. For me, it is the depression. Oh, how I can never seem to escape its grasp. Psychotherapy has certainly helped me get through many bumps, but there came a time recently when I could no longer cope with the weight of the world; physically, emotionally and mentally.

My psychiatrist gently suggested the option of medication a number of times, and each time I thought about it more. I was worried about side effects. I was worried about how my closest family and friends would perceive me. But you know what my psychiatrist said? “Medication is only one option out of many. You don’t have to stop therapy. You can try a medication and see if it helps. We can try other medications in turn and we can wean you off when you are in a better place. It is your own informed decision.” So was $18.20 worth a go? Absolutely. I am now 3 months down the track and I have more reasons to smile and respite at last.

Autism and the myth of social integration.

Something my hubby said the other day made me ponder the societal expectation of our autistic children “integrating well” by making friends. Therapies often focus on this point too; that somehow, the making of more friends equate to more successful early intervention. Keeping friendships is then a mark of having successfully employed social strategies learnt in therapy. Time and time again, my autistic son has been recommended for and invited to “social groups”, where they practise socialising skills to then use on the playground or in other group situations.

Hubby said that his heart was hurting because he saw our autistic son sitting on the steps to the library before school and watching some other children from his class play handball. It was well before 9am and hence still plenty of time to play before that bell rang. What does this scene look like to a non-autistic adult? Perhaps that my son was being neglected and left out of the game, that he had no real school friends.

What does this scene look like to me as an autistic adult? My son was simply surveying the game of handball. Maybe he hadn’t yet grasped the concept of playing it. Maybe he had little interest in playing it. Maybe he felt that watching the game and its participants’ various pivots and moves made better past-time than to actually join in. I won’t know what exactly my son was thinking that morning before school, or what the other children were thinking of him sitting there. However, to me as an autistic adult, this scene was quite “normal”. The child in question did not need the pity of another adult. He was perfectly content NOT playing handball with the other kids.

This concept of “loneliness” may baffle those who aren’t autistic. To us, being a surveyor of the world is to learn, and not necessarily to feel lonely. We like to have a sound understanding of a situation before joining in. We enjoy analysing the world through our own eyes, and to work out how the world ticks, at our own pace. Human interaction is sometimes too overwhelming for us, and even as an adult, I struggle with prolonged, and intense, human interactions. If I knew I was going to a night out with friends, then I would schedule nothing else for the next day, because I would need that time of solitude to rewind and to process the experiences.

Why indeed then is there a focus on social integration for autistic children? If they feel safe and content in their own company, then why force them to interact when they don’t feel ready to or needing to? It comes down societal expectations of how children “should” behave. If a preschool age child prefers their own company, then they are deemed to be “not developing appropriately for age”. However, autistic individuals often find their own tribe as they age, those with similar interests and/or understanding of the world. We often joke that when one enters a room full of autistic people, there is no end to social interactions in that space. We need time to connect with others and to learn social skills, and it is a case of too much too soon to expect a young child to be on that same wavelength of social integration.

Autistic mothers hidden in society

Rewind to early 2015. I was a busy mum to two children under the age of 4. I had just begun full time coursework for my Masters. I hardly knew anything about autism and instinctively brushed it off when the second clinical child psychologist for my son just happened to practise at a clinic specialising in behavioural therapy for autism. He couldn’t possibly be autistic, and the thought of myself being autistic was as far-fetched as if you had told my academically struggling teenage self I would ever go on to do a Masters degree. You know the usual dismissiveness that society holds dear about autism: “He’s too intelligent to be autistic”, “He can sometimes make eye contact”, “The behavioural therapy is working for some things”, “He will grow out of it”, “But all kids do that to some degree”, “You just have to be more firm with him”, “Boys are always more difficult at this age”, “Give him time and exposure”; and my all-time favourite, “It’s because you left him in childcare and he didn’t attach to you”.

Years of university have taught me the rigor of evidence-based research, and the crucial distinction between well-cited peer-reviewed articles and the ones which are solely published to fill academic space. Hence, I began my research into autism when my son’s diagnostic process was still pending. In fact, I did a university assignment on autism and it certainly opened my eyes to the beautiful possibilities of embracing neurodiversity in both my son and in myself. I spoke to parents of autistic children as part of my qualitative research, and I joined online groups for autistic women to find out more. One particular family and their daughter really made the “aha” moment for myself. The characteristic and behavioural traits that the mum described of her daughter’s early years were almost identical to my own childhood: the sensory seeking, the attention to detail, the asynchrony of learning language and motor skills, the “functional solitary” instead of “interactive peer” play, the anxiety and overwhelm of social situations, the adherence to routine and rigidity, and also the innate love of the natural world and its wonders.

In mid-2016, I finally wrought the courage to seek an autism assessment, half-believing and half-disbelieving at what the process would reveal about myself. It was certainly difficult answering questions during the assessment process, as I was purely baffled at what some of the questions asked. The most difficult section required me to infer and rationalise emotions; no surprises there. On the day that I was told I am after all autistic, having met the diagnostic criteria under the DSM-V (and far surpassed the “cut off score”), I felt….well, free. The entire world suddenly made sense at long last, and I finally knew myself, just as I am. I ambled to my car, and every leaf that drifted on the gentle wind appeared to flicker a ray of pure sunlit delight. I laughed and cried as I vividly remembered hugging a tree as a toddler, the breeze lifting my hair, and the leaves swaying in the sunlight. I am still me.

Proponents of the debunked vaccine-autism link often state “evidence” that there are hardly any female autistic adults around, that autism is a recent epigenetic epidemic. The fact remains that like me, there are countless mothers who are autistic in society, who are “hidden” from statistics because they have gone, and continued to go, undiagnosed. Previous diagnostic bias from assessments that were developed for “classic autism” tended to favour males. Nowadays, whenever another adult finds and joins the autistic community, many of us like to add to our initial greetings the much appreciated words: “Welcome home.”

Autism and the Environment

Autism is a neurological difference with which one is born with. Additionally, sensory processing difficulties often go hand-in-hand with autism. It is no surprise then that the autistic individual will view the world differently, through an “autistic lens” if you will. I recall watching the movie: “X+Y” and thinking just how great a representation it was of how I saw the world: how overwhelming the bright lights were, how background noise distracted me easily, how new places and situations caught me off guard and made me meltdown, or shutdown. Is the physical world always a struggle? Well, yes and no. I’d like to give a few examples of how autistic individuals see beauty in the world; how the environment around us isn’t always our enemy.

Take environmental stewardship. I remember once writing to my local council because the recycling bins in the block of units where I lived were almost always empty, yet the rubbish bins would be overflowing with bags of both recyclables and non-recyclables. I made an impassioned plea for the council to intervene with proper signage to direct and educate residents on the appropriate disposal of their household waste products. Change begins with one person after all, and I was more than pleased when the council responded with exactly that. Strange as this may sound, but I sense a smiling Mother Earth when we do the right thing by her and for future generations.

Now take the built environment. When city streets are lined with greenery, and a stretch of wall laden with ivy, suddenly the bricks and mortar seem much less hostile. I feel like I can breathe in this constructed world because of the nature woven in. When I drive, I often forget the street names, but my sense of direction is guided by landmarks: a 100-year-old pub on this corner, a zebra crossing midway down that street, a highly gated property that’s 4 streets down from school XYZ, a gnarled tree that looks straight out of Winterfell. Viewing my trips thus, it becomes an active story, with its own true sense of discovery. It is not just the destination after all, but the journey.

Take twilight – the natural occurrence, not the book. There’s something innately beautiful about the twilight hours. It gives a rosy hue to the horizon, especially in the months of summer. You feel the air cool, hear the birds chatter, smell the lingering scents of flowers, taste the half prepared dinners wafting out of windows, but most of all, you see the welcoming approach to the end of another day. I relished in the feeling of witnessing the world continuing to spin while I took the time to wind down to rest.  When I stare out into the twilight, I can picture countless stars extending into the universe, disappearing into the many galaxies that twirl their own mysteries. The twilight hours are magic, where I can believe that hope lives on for a new beginning.