This is part 3 of my daughter’s high school senior paper on autism. If you are just finding this page, you can start by reading Part 1 here, and Part 2 here.
My daughter was diagnosed with autism at the age of 16 and this paper reflects on her experiences with a late diagnosis. She is our guest author and guest artist.
While this is the final section of Isabella’s research paper, we hope to write more on our experiences as a family and how her autism looked from the outside–from a parent’s perspective–as well as how it looked from the inside–her perspective.
Autism Research for the Autistic Individual – Part 3
Neurodivergent struggles can sometimes sound familiar to neurotypical people. With the rise of social media, there has also been a rise in self-diagnosis. Self-diagnosis is simply where someone finds themselves fitting the criteria for a certain disorder or ailment and says they have it. Self-diagnosis for mental health and developmental disabilities can be the first step to getting help, however, sometimes social media can cause people who do not have a certain disorder to self-diagnose.
I believe this shows how few people feel they fit the “norms” of society. Self-diagnosis can lead to misdiagnosis; “self-diagnosing can lead to receiving the wrong treatment and interventions down the line.” (“Social Media Raises Mental Health Awareness but Increases Risk of Flawed Self-Diagnosis”). An inaccurate self-diagnosis can lead to future complications. Autism is very often self-diagnosed. Not only can an official autism diagnosis bar individuals from certain life options it can also be very expensive which makes self-diagnosis more appealing to many.
Society has created a tight box for people to fit into. There have always been high standards for beauty, success, and behavior. From periods where corsets were worn to keep a curvy figure but ankles were scandalous to the flappers of the 20s, and then to the housewives of the 50s, there has always been a rigid expectation of what is considered normal.
In the 21st century, expectations have broadened quite a bit but there are still standards of societal norms. “The young people I spoke with were mainly girls, ages 13-17 and they feel as though they are forced into having to be a certain way because society expects them to be like that” (Society’s Pressure to Be Perfect – Achieve More Scotland). Bullying someone because they’re different in some way is still way too common. These standards are not healthy for anyone, neurotypical and neurodivergent alike.
Mental health is a big issue in every population. People who don’t feel like they fit in or feel like they are too different are at higher risks of certain mental health disorders. About 17 percent of people have self-harmed at least once in their life, on top of that, people within the LGBTQ community have been found to have much higher rates of self-harm. (Bacsi).
Analysis has shown that autistic individuals are more likely to be part of the LGBTQ community, and afab (assigned female at birth) autistic individuals have a higher likelihood of being part of the LGBTQ community than amab (assigned male at birth) individuals. (“Autistic People More Likely to Identify as LGBTQ”). Suicide is a scarily common death in the United States. Suicide is the 12th leading cause of death in the US and the 2nd leading cause of death in the world for people between the ages of 15-24.
Once again, these statistics are higher within the LGBTQ community and even higher for those in an ethnic minority while being a part of the LGBTQ community. (“Suicide Statistics and Facts –”). Eating disorders affect at least 9 percent of the population but only 6 percent is considered medically underweight. About 10,200 deaths occur from eating disorders every year. (National Association of Anorexia Nervosa and Associated Disorders). Many eating disorders result from a person trying to fit a standard of appearance either in their mind or the world around them.
If the world were accepting of everyone, no matter how they thought or looked, the world would be a much happier place. Society’s standards for everyone are unhealthy. You’ll hear people talk about there being 24 hours in a day and there being an expectation of someone doing 30 or so hours of activities a day. It’s impossible to spend quality time with loved ones, work a job, do well in school, and have hobbies all at the same time. At least, it is while taking care of yourself.
Many people see autism as something that needs to be “cured”. When looking at autism as a medical ailment in need of being cured, there are many counterpoints to the argument of working with it, not against it. Throughout the years, organizations have often looked at neurodiversity through a lens of fear. Even therapists have supported trying to “treat” the symptoms of autism instead of teaching coping skills.
Historically and traditionally, neurodiversity has been seen as an issue that needs to be fixed. The thoughts behind this are that our society’s standards are there for a reason and should not change; people should grow and learn how to fit into said standards because that is the real world and people must be able to get through it. Proponents feel standards are only there to help people succeed.
The support behind proven results in therapies such as ABA are due to the fact that they get the desired results and the child acts how society expects them to. There is no need to build off of a child’s strengths if they are able to fit into the school system and excel. It is thought that they will do better in life if they seem normal as opposed to if they seem different from others.
At the end of the day, autism affects a person through the areas of: social difficulty, anxiety, noise sensitivity, abnormal or flat speech, poor eye contact, fixations, stimming, depression, and even aggression. (Birch). The autistic person deserves the best quality of life they can get. I find many “treatments” of autism to be dehumanizing. ABA, while well-intentioned, works in the same way dog training does; no wonder so many people come out of it with PTSD. Not only does it treat children like animals, but it promotes a neglectful way of parenting. When children cry, they are distressed. Ignoring them does not change that, it just teaches them to cope on their own, without help and without safety.
Many autism organizations, mainly Autism Speaks, promote fear with their “advocacy.” They spread information about autism breaking healthy families, causing divorces, and draining money. They’ve even had a woman say that she considered driving her car off a bridge due to her autistic child. They do not have a single autistic person on their team and only 4 percent of their budget goes to helping autistic people. (“Why I Do Not Support Autism Speaks”).
All things considered, autism affects a large number of people, and it is still relatively unknown as to the best way to work with autistic children. From ABA therapies to play therapy to talking about awareness and advocacy, everyone has their own way they want to deal with their neurodiversity. Personally, I have worked with a play therapist since I was 13. She mainly talks with me about my feelings, as most therapists do, and that is what has worked best for me.
I spent the majority of my childhood not knowing I had autism and not having professional help with it. What truly helped me was homeschooling. My brain did not work with the formal public school system. People accepting that other options were better for me was what made a difference: flexibility, compassion, and understanding.
Every kid is incredibly different, but, without seeing their differences–their strengths and weaknesses–none of us would get anywhere. Compassion, kindness, and connection are what make us human and neurodivergent children should not be treated any other way. They still deserve to be seen as and to feel human. Overall, I believe that research and “treatments” for autism and other neurodiversity should be for the sake of the autistic person, not the people around them.
Isabella is a current high school senior. She is an artist and writer and overall really amazing person. She was diagnosed with autism at the age of 16. You can follow her art on Instagram @isobell.dohn.art
If you’d like to follow more of these stories, please subscribe to my newsletter here. I try to send out one newsletter a week on Fridays.
Autism Research for the Autistic Individual – Part One
Autism Research for the Autistic Individual – Part Two
“Autistic People More Likely to Identify as LGBTQ.” SPARK for Autism, 18 Jan. 2022, sparkforautism.org/discover_article/autism-LGBTQ-identity.
“Allistic and 10 Other Important Autistic Terms Explained Well.” Spectroomz – Work From Home Jobs for Autistic Adults, 12 Oct. 2022, www.spectroomz.com/blog/allistic-definition.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Text Revision Dsm-5-tr. 5th ed., Amer Psychiatric Pub Inc, 2022.
“Autism Spectrum Disorder (ASD) | CDC.” Centers for Disease Control and Prevention, 8 Aug. 2022, www.cdc.gov/ncbddd/autism/index.html.
Bacsi, Kira. “Self-Harm Statistics.” The Recovery Village Drug and Alcohol Rehab, 2 May 2022, www.therecoveryvillage.com/mental-health/self-harm/self-harm-statistics.
“Benefits of Play Therapy and Autism.” Verywell Health, 15 Apr. 2022, www.verywellhealth.com/play-therapy-and-autism-the-basics-260059.
Birch, Nera. “This Graphic Shows What the Autism Spectrum Really Looks Like.” The Mighty, 15 Aug. 2022, themighty.com/topic/autism-spectrum-disorder/autism-spectrum-wheel.
Blanchard, Ashley, et al. “Risk of Self-harm in Children and Adults With Autism Spectrum Disorder.” National Library of Medicine, 19 Oct. 2021, www.ncbi.nlm.nih.gov/pmc/articles/PMC8527356.
Evidence of Increased PTSD Symptoms in Autistics Exposed to Applied Behavior Analysis | Emerald Insight. 2 Jan. 2018, www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html.
Glock, Melanie. “Sensory Integration Disorders in Autism.” Autism Research Institute, 24 Feb. 2022, www.autism.org/sensory-integration.
“Hyperfixation – What It Is, What Causes It, and How to Overcome It.” Oxford Specialist Tutors Online, 12 Jan. 2022, oxfordspecialisttutors.com/hyperfixation-definitive-guide.
“Learn Sensory Integration Basics | Sensory Integration Tools.” Pathways.org, 26 May 2022, pathways.org/topics-of-development/sensory.
Matthews, Dylan. “We’ve Called Autism a Disease for Decades. We Were Wrong.” Vox, 31 Aug. 2015, www.vox.com/2015/8/31/9233295/autism-rights-kanner-asperger.
National Association of Anorexia Nervosa and Associated Disorders. “Eating Disorder Statistics | General and Diversity Stats | ANAD.” National Association of Anorexia Nervosa and Associated Disorders, 8 June 2022, anad.org/eating-disorders-statistics.
Otsimo Editorial. “Strengths That Come With Autism and Why You Should Care.” Otsimo, 9 Aug. 2021, otsimo.com/en/strengths-challenges-autism.
Pietrangelo, Ann. “Stimming: Causes and Management.” Healthline, 28 June 2019, www.healthline.com/health/autism/stimming.
Sheffer, Edith. Asperger’s Children: The Origins of Autism in Nazi Vienna. Reprint, W. W. Norton and Company, 2020.
“Social Media Raises Mental Health Awareness but Increases Risk of Flawed Self-Diagnosis.” Verywell Mind, 1 Feb. 2022, www.verywellmind.com/people-are-using-social-media-to-self-diagnose-5217072.
Society’s Pressure to Be Perfect – Achieve More Scotland. 19 Nov. 2018, aandm.org.uk/2018/11/19/societys-pressure-to-be-perfect.
Suicide Risk Among People With Autism Spectrum Disorder | Suicide Prevention Resource Center. www.sprc.org/news/suicide-risk-among-people-autism-spectrum-disorder. Accessed 19 Oct. 2022.
“Suicide Statistics and Facts –.” SAVE, save.org/about-suicide/suicide-statistics. Accessed 19 Oct. 2022.
“What Is Applied Behavior Analysis?” WebMD, 9 Apr. 2021, www.webmd.com/mental-health/what-is-applied-behavior-analysis.
“What Is Echolalia?” WebMD, 12 May 2021, www.webmd.com/parenting/what-is-echolalia.“Why I Do Not Support Autism Speaks.” Autistic Mama, 2 Apr. 2022, autisticmama.com/do-not-support-autism-speaks.