Some thoughts after an Autism Conference
Thought #1) The title of the conference was "Is this Autism? Recognizing the less obvious presentations of autism". It was taking place at the Royal Ottawa Hospital, our tertiary care mental health hospital.
I had registered because I thought this was going to be about diagnosing autism in the psychiatrically complex, and I wanted to know the implications of this diagnosis on treatment and the presentations of other psychiatric conditions.
This is not the population this conference was talking about.
This conference was focused on a milder form of autism in a population of people who are able to adapt to society and its demands, but at significant cost to one's own mental health. At the conference they referred to these people as "autistics who camouflage" or "late-diagnosed autistics". Masking their difficulties and other autistic symptoms takes a toll, but these people are able to live independently and form healthy relationships.
This is a very separate group than who I work with and they require very different interventions (if any is needed).
I am more familiar with the more severe forms of autism where functioning is severely limited and the disability far more evident. These patients can have various degrees of developmental delay, be non-verbal and require residential care.
Because of this, I wonder why we are calling them the same thing. In medicine, a reason behind giving a diagnosis, or naming an illness is that we know that we are talking about the same thing when we discuss research, symptoms and treatment. In autism, given the wide variety of presentations, the diagnosis does the opposite of clarifying for people what we are talking about. This criticism is not unique to autism, it is also present in the diagnosis of schizophrenia too. Two people can have completely different symptomatology and be labeled with the same diagnosis. It is confusing, especially when the treatments are also so different depending on where on the spectrum of autism you lie.
Thought #2) The latter group of much higher functioning autism was once invisible. Because the challenges were not obvious to others, they struggled in silence wondering why things that were so easy to others were so hard and confusing for them. I learned that those with higher functioning autism need to process more information and in a different way than most of us because of how they see and experience the world. What might be automatic and instinctive for those of us without autism, is painstaking and paralyzing for people with autism because they are swamped with more details they have to make sense of without this intuition.
There is a movement to better recognize and accommodate this population and I am in full support. These patients have been spending most of their lives trying to fit in, trying to downplay what they thought were broken parts of themselves and being given the diagnosis (and what can be an identity) of being autistic has been freeing and enabled them to accept themselves and even see the gifts of autism.
I really think we could all take something away from what we are learning about autism and the advocacy that supports this population. Many of us have traits of autism without having the full diagnosis. You can have all the symptoms and still not qualify for the disorder if there is no subjective distress or objective dysfunction in your life. What I have taken away is that there are many ways in which living can be harder for lots of us. And it does not have to come with a diagnosis for them to be valid. Prior to this wave of higher-functioning autistic individuals receiving this diagnosis, these individuals were still struggling and having valid, legitimate difficulties. That this diagnosis exists does not change those challenges, but it does gives me hope that people will look within themselves and have more compassion in how we each uniquely experience the challenges of living. I see patients myself who struggle with making friendships and interpreting social cues who do not have autism. I have patients who experience the environment around them as grating and uncomfortable and do not have autism. But what I took away from this conference is that these difficulties are just as valid with or without a diagnosis.
Though I understand how a formal diagnosis can mean your challenges are taken more seriously, the lesson here is that we should not need someone else, or an establishment to give you credibility, or to tell us what is or is not true about how we live every day. Because in the end, a diagnosis does not absolve you of taking responsibility for your own life, or for the work required to know what makes you thrive. We are all, autism or no, still responsible for paying attention to our needs and accommodating them. I hope fewer of us need a formal diagnosis for permission to be kinder to ourselves, to understand ourselves better and to be more accommodating of our needs, which happens to be the treatment for higher-functioning autistics. It is not to eliminate symptoms or change how they experience the world, but to empower them to know themselves better and to make the necessary changes so that they can live their best lives. To me, this is the universal mental health treatment that applies to everyone.
Thought #3) There are different tiers of mental health care and the approach can be radically different depending on the patient's circumstances.
There is better recognition of autism in patient populations where there is less comorbidity. There is better access to this diagnosis in patient populations that can afford psychology and testing.
This is a no brainer, but there is better recognition of the higher functioning forms of autism in patients without a history of trauma, substance use and who come from loving, secure families. This is also not unique to the diagnosis of autism, but all diagnoses.
As a psychiatrist working in a publically-funded system with experience in acute care, I do not see many of these kinds of patients. And so there is a disconnect. Though I found the conference informative and the lecturer so knowledgeable, it did not feel like this conference applied to my patient population.
There are many of us working in the mental health field where this diagnosis of higher-functioning autism is not relevant, not because it is not there, but because it is a diagnosis impossible to make. There are too many other variables contributing to the patient's severe dysfunction and distress. It is also a diagnosis that would not change management in any significant way. You have to have a patient psychologically-minded enough, motivated enough and organized enough where having this diagnosis promotes self-understanding that is therapeutic or beneficial in some way. And that is not who I and most of my colleagues see in acute hospital-based psychiatry.
If you think you knowing more about neurodivergence or autism may deepen your own self-understanding or understanding of others, consider visiting: www.isthisautism.com or https://neurodivergentinsights.com/