When I started Embrace Autism, I never imagined that I would have the honour to speak at the United Nations. But this year, I was part of World Autism Day at the United Nations.
My keynote speech focused on the consequences of not being diagnosed early in life. My speech starts at 7 minutes and goes to 17 minutes). I have included a transcript below the video.
UN Speech Transcript: Autism, Diagnosis, & Policies
When I was six years old, my best friend asked me, “What’s your favourite colour?” I said, “What’s yours?” She said, “Red.” I said, “Mine, too!”
Then she asked, “What’s your favourite animal?” and I said, “What’s yours?” She said “A dog”, and I said “Me, too!”
In truth, I was terrified of dogs—cats were my favourite animal, and my favourite colour was actually purple.
My friend became very irritated and said, “Can’t you think for yourself?”
You see, very early on, I had compiled a list of rules for making friends because I don’t have an intuitive sense of how to relate to people, so I followed a set of social rules that I learned through trial and error instead.
But It wasn’t just friends I was having trouble with;
I also had problems at school. My parents were called in many times over the years because I was following the rules far more than other kids. I followed the rules because those were the rules. And I felt proud about how good I was. But I realized that teachers don’t call your parents because everything is going so well—they call when they identify an issue. The issue they identified was that I was following the rules. The issue that I identified was that I had to figure out which rules to follow, and which one’s too not.
In addition, teachers were concerned about some of my other behaviours; for example, as I was saying, I loved the colour purple. When I say I love the colour purple, I mean it was the only colour that I wanted to use. I coloured everything purple; the sun, the grass, the house, the people, everything. The teacher called my parents worried about why I was refusing to colour the sun yellow, which would be age appropriate. Intellectually I knew the sun was yellow, but I was so consumed with the colour purple that I just couldn’t bring myself to make the sun yellow.
So what do these three stories have in common? They’re all examples of diagnostic criteria of autism.
Hello, and thank you to the committee for this opportunity to address policy change on diagnosing autism.
I am Dr. Natalie Engelbrecht and I am a late-diagnosed autistic. I am also a registered psychotherapist and a naturopathic doctor from Canada. And I have a practice focused on adult autism assessment, and with other autistics I co-created a free digital resource, a website called Embrace Autism, that is used by medical professionals and people worldwide for information, and advocacy.
The springboard for doing this was that in an attempt to better understand myself, I found there was little information on adult autism. There were a few excellent blogs, but no science-based resources. And I love science, just ask my kids. I recall their little eyes rolling, and them saying “Yes mom” as their dinner discussions would have to be backed up with peer-reviewed evidence. It’s turned out alright, one is a doctor and the other is studying to be a professor of philosophy.
So why was I 46 years old before I got an autism diagnosis?
There are many reasons we don’t get identified. For example:
- The manuals for diagnosis, specifically the DSM-5 and ICD-11:
- Used disease-based language focused on the perceived negative traits of autistics at the exclusion of the strengths. And that’s just not how I saw myself. And that is not how others saw me. I am a professional with 3 degrees, who is married, and has two great kids. And I am a hard-worker. While non-autistics are driven to create social connections, I am driven to pursue my passions, but the diagnostic manuals label my passions as highly restricted— fixated—abnormal. My preference for work over socializing is seen as a deficit in social communication and interaction, and asocial. How would someone else feel if I called their need to socialize abnormal, fixated, rigid? You see, we can pathologize anything that does not fall into the majority.
- A scientific approach to autism should not be so biased toward the negative. Additionally, it should not have judgmental descriptions of neutral characteristics. For example, strong and consistent preferences may be perceived as negative by others, but are not experienced negatively by autistics themselves.
- This stigmatizing language affects how medical professionals view and assess autistics and negatively affects how we see ourselves. Additionally, it can lead to autistic people not identifying as autistic because they don’t resonate with the negative descriptions. Only the people that struggle the most see themselves in those descriptions.
- There are many healthcare professionals that truly want to help autistics, who have spoken to me about their anxiety (lack of confidence) when getting referrals for adult autism diagnosis because they state they have “little to no training in assessing adults.” And here is some true irony—we are highly drawn to healthcare professions. We are often your doctors, and surgeons, and psychiatrists. But many of us hide it. Research shows that we make better social psychologists because of our ability to systemize human behavior. Can you imagine what that is like to feel the need to hide who you are, when in fact your traits are actually what allows you to excel?
- And this hiding is called camouflage, we hide our autistic proclivities, and this causes missed diagnosis. Late diagnosis of autism takes a major toll on our mental health. While 9% of the general population struggle with mental illness, 70% of adult autistics are struggling with a co-occurring, major mental illness, such as depression, anxiety, eating disorders, and substance misuse.
Research shows that we are much less likely to develop mental illnesses if we are identified earlier in life.
But outdated concepts of autism are creating barriers to us getting diagnosed. There are a very limited number of clinicians that have training in adult autism assessment. Research shows on average it often takes over 3 years to get a successful diagnosis due to misdiagnosis. Cost can be prohibitive. And it can be geographically impractical or overwhelming for an autistic. Autistics have stated that they would never be able to manage traveling to a different city, booking a hotel, and all the things involved in going to an assessment outside of their city. Research is showing that that is unnecessary—online diagnosis is as least as accurate and far more comfortable.
The health professionals I saw over the years never considered my autism for reasons such as my being female, having friends, making eye contact, I had good hygiene, I hid anything I felt was different about myself, and I didn’t have an intellectual or language disability. And I had a lot of empathy—to the point that I absorb other people’s emotions—this is a new term in the autism research field empathic attunement in the autism research field.
A better understanding of myself has allowed me to accept myself. It has helped my loved ones understand me better and increased my overall well-being.
Something I found out recently, that is pretty cool, is that there is a term called Embracing that is now making its way out into the community. It means accepting the core features of autism—without diminishing or compromising our authentic selves.
In conclusion, accurate diagnosis is the leading factor in improving quality of life for autistics, as it provides a framework to understand ourselves, and it would be even better if that framework included our strengths.
It is time for policy on autism diagnosis to be reassessed to reflect the actual needs of autistics. Because autism is not just a word, or a concept, it is who we are.
Timing of video
Policy: Autistic perspectives on Policy and Advocacy
- 2 min Introduction to Policy (0 min)
- Charlotte VALEUR: Event moderator
- 5 min Video contributions from around the world (26 sec)
- Luciana VIEGAS (Brazil): Founder Vidas Negras com Deficiência Importam
- Sara ROCHA (Portugal): Co-Founder Associação Portuguesa Voz do Autista
- Tarun PAUL MATHEW (India): Co-author Talking Finger
- Rhys GRIFFEN (USA): Voice actor | Author children’s books
- Karen MURIUKI (Kenya): Consultant Ubongo TV
- 10 min Keynote Dr. Natalie ENGELBRECHT (Canada): Dual-licensed registered naturopathic doctor & psychotherapist (7:02)
- Policy panel moderation Alex PEARSON (USA): Industrial-Organizational Psychologist-Practitioner
- 30 min Panel discussing Neurodiversity Advocacy and Policy (16:53)
- Ben VANHOOK (China-USA): Autistic Self-Advocate | Public Speaker | Community Support
- Dr Jenny MAI PHAN (USA): Department of Health & Human Services
- Tyla GRANT (UK): Creative Strategist | Building ALRYT.world
- Pranav Kumar RAJAGOPA (India): Inclusion officer
- Cisco Elizabeth BONKER (USA): CEO Communication4all.com
- 2 min Thank you to all participants and the UN (44:13)
- 3 min Closing remarks Charlotte VALEUR (Denmark): Chair Institute of Neurodiversity ION (44:23)
I want to give a huge thank you to the United Nations and Institute Of Neurodiversity for organizing the event and the opportunity to address policy change on adult autism diagnosis.
Let us know what you think!