My daughter was diagnosed with autism at the age of 16. She and I have been talking about sharing her journey, as well as my journey as her mother, with what she has gone through being an autistic girl. The reality is, autism looks very different in girls than it does in boys and has made our journey, and the journey of other autistic women, a long one.
There is still much research to be done on autism, and much research to be done on autistic individuals who do not fit into the research traditionally done on young, white males.
As part of her high school senior class, Senior Seminar, she was required to create a thesis and project based around something important to her and an area that may be important to her in the future.
As she and I start this conversation on her experiences, we decided to first share her paper (this is part 1 of 3) as an introduction to her experiences with autism.
Autism Research for the Autistic Individual – Part 1
I am autistic. I was diagnosed at 16 after years of testing. Since my diagnosis, I have learned much more about what autism is and what it looks like. I have also discovered that autism, as well as other developmental disabilities, is looked at from the allistic viewpoint. (Allistic refers to without autism. “Allistic simply means a non-autistic person.” [“Allistic and 10 Other Important Autistic Terms Explained Well”.]) Growing up autistic and having a cousin with autism, I have seen the struggle it causes both first and secondhand. I believe work to help autistic children should truly be for the child, not the people who interact with the child. Society’s standards for both neurotypical and neurodivergent children are unhealthy and lead to more harm than good.
Talking about autism, also referred to as ASD (autism spectrum disorder), and other neurodiversity requires a slightly different vocabulary than daily conversation. The most important term is neurodivergent. “Someone who is neurodivergent has some sort of variation to their neurology or overall brain structure.” (“Allistic and 10 Other Important Autistic Terms Explained Well”). Neurotypical is the opposite, “Someone who is not neurodivergent”. (“Allistic and 10 Other Important Autistic Terms Explained Well”). Another term often used is Allistic. Allistic, as explained previously, is simply used for people without autism. The term allistic can include all other neurodiversity other than autism.
A common phrase used within autism is hyperfixation. Hyperfixation refers to an intense focus or interest in a single subject that can lead to the exclusion of everything else. (“Hyperfixation – What It Is, What Causes It, and How to Overcome It.”). Hyperfixations can also be referred to as a special interest.
A term many people are familiar with is Asperger’s syndrome. Aspergers is used to describe high-functioning individuals with ASD however it is a relatively controversial and outdated term. Many autistic people prefer to not use the term at all due to its name coming from Hans Asperger, an Austrian physician known for creating the term “usefulness levels” and contributing to categorization. He also sent many children to the Nazi Spiegelgrund clinic where the children were to die. (Sheffer).
As an extension, the terms high functioning and low functioning are commonly used but looked down upon by the autistic community. High functioning refers to an autistic person who requires minimal help in daily life, low functioning refers to a person who requires assistance often. These terms are also relatively controversial for the correlated assumptions “erase the support needs of autistic individuals across the board.” (“Allistic and 10 Other Important Autistic Terms Explained Well”).
Autism is a developmental disability found in about 1 in every 44 children. It is mostly diagnosed in early childhood with parents noting concerns before the age of 3. (“Autism Spectrum Disorder (ASD) | CDC”). It affects every aspect of a person’s life throughout adolescence and adulthood. There is a large range of signs and symptoms that are unique to each specific person. A few common signs are lack of eye contact, skipping developmental milestones, lack of facial expressions or vocal intonation, echolalia (repeating of words or phrases [“What Is Echolalia?”]), and stimming (movements and/or vocalizations that stimulate the mind [Pietrangelo].) (“Autism Spectrum Disorder (ASD) | CDC”).
When I was very small, my mom knew something was off: I had a severe speech impediment to the point that specialists thought I was deaf, I could not handle certain textures of clothes or having my hair brushed, I had a very insecure attachment style even though there was no reason for me too, I had major breakdowns that I could not be pulled out of, and I became overwhelmed very easily.
In 2nd grade, it was clear that my brain processed information differently than the average student: I scored 7th percentile on state testing for reading though when professionally tested for a learning disability, my comprehension was high school level. My results did not qualify me for an IEP as my low scores were within the normal statistical range for my age. According to their tests, I was an average kid who just did not try hard enough. However, these results did not change my mom’s opinion that something wasn’t quite right.
Read Part 2 Here
Isabella is a current high school senior. She was diagnosed with autism at the age of 16. You can follow her art on Instagram @isobell.dohn.art
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“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.
8 Replies to “Autism Research for the Autistic Individual”
Beautiful artwork and very interesting and informative writing. I agree with the statement “I believe work to help autistic children should truly be for the child, not the people who interact with the child.” This is a profound statement and one I think should be screamed from the rooftops.
I’m looking forward to reading part 2.
Thank you so much, Bridgette, for taking the time to read and respond. It seems like such a straight forward concept, doesn’t it? Yet it means more work for the school, for the teacher, for the parent, as they learn to work with the needs of the child. When we just “change the child” to fit into what society wants, everyone gets to keep humming along and pretend it just doesn’t exist.
This is so fascinating to hear from your viewpoint! I can’t wait to read more! And I am so glad you are bringing more awareness to not only autism, but also to the term and ideas surrounding neurodiversity. Our schools need to embrace neurodiversity.
Thank you so much, Lisa, for taking the time to read this and for commenting. I can’t agree with you more, neurodiversity doesn’t only include Austism, but all types of differently working brains. This includes ADHD and dyslexia and sensory processing disorder and OCD and we could go on and on and on, often with different neurodiversities overlapping. Schools have been traditionally built around neurotypical brains, no wonder so many children suffer. I hope too that schools will not only embrace neurodiversity but look at the gifts it brings.
This is interesting and I loved reading it! I can’t wait to read more…
Thank you so much Brandy, for taking the time to read and comment! You know, change and awareness is coming, and I won’t be surprised if our kids have a say in that change.
Thank you Bella for your willingness to share your personal story and to help other families affected by autism. We have a 3 year old great-grandson with autism. He was diagnosed a year ago at age 2 and has had a ton of therapy in the past year and made progress. He has a severe sensitivity to all food and survives on pediasure (sp?). Fortunately, he has a loving, supportive family. I believe autistic people can live a happy, fulfilled life. We all have flaws, none
of us are perfect.And best of all, God loves us just the way we are.
Hi Janis, thank you so much for both reading and commenting. I look forward to you all finding out what your great-grandson’s superpower is. We all have gifts, but it seems like when someone with ASD finds theirs, their world opens up in a brand new way and they see things that those of us outside of the ASD community can only dream of. When my nephew was little (also ASD), he had a play basketball hoop in the house, and he could make a basket every single time. Food sensitivities are common and as he grows, he will hopefully find new safe foods and be able to expand his palette in time. When things get stressful, he’ll return to these safe foods but when he feels good in his body, hopefully, he’ll be able to expand out.