Autism Research for the Autistic Individual – Part 2
This is a continuation of a three-part post about my daughter’s experience being diagnosed with autism at the age of 16. She, my guest author, wrote this paper as part of her high school senior seminar paper. She continues to work on a physical project around this paper and will speak before a panel of teachers in December. If you are just finding this now, please read Part One here. All artwork is hers.
Autism Research for the Autistic Individual – Part 2
Through the following years, I was taken to multiple different places for help with my reading discrepancy. We assumed it was dyslexia and hoped that it would improve with age. It did, but there were still learning issues. We hoped that a formal educational diagnosis would help with college.
Last year, we decided to go through formal testing once again. I, as expected, showed few signs of dyslexia, however, the person doing my testing brought up the possibility of autism. It explained many of my internal feelings as well as my panic attacks, my sensitivities, my learning struggles, and my relationships with other people. In the end, I was diagnosed with Level One Autism. Turns out, I am autistic enough for it to hurt but not enough for others to notice.
Living with autism can be a challenge that takes a lot to work through. Often, for a neurodivergent child, the “normal” way of coping is not the best way or even a good way to deal with a situation. Trying to teach a child to function neurotypically does not work even if it sounds appealing to the people around them. There are many different therapies available to help with autism, however, a lot of these have been under fire and many therapists have been taught to change their ways.
A common “treatment” for ASD has been applied behavioral analysis, or ABA. “Applied behavior analysis is a type of interpersonal therapy in which a child works with a practitioner one-on-one. The goal of applied behavior analysis is to improve social skills by using interventions that are based on principles of learning theory.” (“What Is Applied Behavior Analysis?”). In basic terms, ABA therapy uses positive and negative reinforcements to teach the child to act in the desired way.
There are clear and testable results to ABA therapy which is why it is still practiced. However, there are quite a few negatives and many believe it is harmful to the neurodivergent child. One major comparison that is brought up with ABA is its many similarities to dog training. While the punishments only tend to be ignoring the child until they do the desired behavior, studies have shown that almost half of children who have experienced ABA therapy have developed PTSD (post-traumatic stress disorder).
“Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA.” (Evidence of Increased PTSD Symptoms in Autistics Exposed to Applied Behavior Analysis | Emerald Insight).
Working with autism requires patience and empathy. A neurodivergent person should not be expected to fit into society’s small box of “normal”. A neurodivergent person can coexist and collaborate with the “real world” without acting like a neurotypical person. There are many ways that parents, caregivers, and teachers can support and collaborate with a neurodivergent child; fundamentally working at a child’s level.
Play therapy, or floortime therapy, is a way for children to learn social, technical, and emotional skills in a healthy manner. While playtime therapy and floortime therapy are slightly different, they build off of the same concepts. “Play therapy was originally conceived as a tool for providing psychotherapy to young people coping with trauma, anxiety, and mental illness. In that context, play becomes a way for children to act out their feelings and find coping mechanisms.” (“Benefits of Play Therapy and Autism”).
Floortime builds on a child’s interests or hyperfixations in order to form social skills and connections. (“Benefits of Play Therapy and Autism”). Play therapy can teach social awareness in a safe and controlled environment, which is especially important for autistic children in that new and uncontrollable situations can cause overwhelm which can lead to shutting down or acting out.
Another reason therapy or social classes are extremely important for autistic children is that neurodivergence is an explanation but not an excuse. Therapies such as play, floortime, or even normal discussion-based therapy can help an autistic person develop healthy coping mechanisms.
Self-harm is substantially more common among autistic people (Blanchard et al.). Autistic people are also three times more likely to attempt suicide (Suicide Risk Among People With Autism Spectrum Disorder | Suicide Prevention Resource Center). The difficulties to cope without help can not only hurt the autistic individual but those around them. Therapy can supply an autistic person with healthy ways to redirect feelings of overwhelm so it does not erupt as angry outbursts or depressive episodes.
While autism has its struggles, it also has its strengths. Neurodivergence does not mean someone is broken, it simply means their brain works differently. Common strengths include strong memory, logical reasoning, puzzle-solving skills, and independent thinking. (Otsimo Editorial). Many strengths are unique to the individual and they also tend to go along with their interests. One autistic person may be amazing at art having learned to look at the world in a different way of shapes and colors. Another autistic person may have an easier time learning languages studying many.
Believing an autistic person should function like a neurotypical person can dampen their natural joys, frustrate them, and hurt their motivation. Personally, taking classes I do not have an interest in can burn me out very quickly, even if that class is the only requirement at the time. It leads to long periods of procrastination and nights of fighting to get it done last minute.
On the other side, I’m hyper-observant and enjoy analyzing people and media. I do not find work observing to be draining at all; I often feel happy after. As an extension, I’ve been told I have a good ear for language, both English and foreign. I pick up vocabulary and context quicker than my neurotypical peers.
Teaching coping skills using an autistic person’s interests can make them stronger as a student, family member, friend, and individual. By letting neurodivergent people stay who they are and want to be, you’re allowing them to flourish into the person they are happy to be. Trying to fit a neurodivergent person into the box of “normal”, you are taking away some of their joy. It is far simpler to help a person through life instead of changing who they are.
Bio
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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Work Cited
“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.
Thank you for sharing your story. I have a feeling this information will help other people immensely.
The statistic about nearly half of the children treated using ABA therapy developing PTSD was shocking. In my opinion, I consider it a complete and utter failure. If those were the odds presented to many parents I think they might choose to not go that route. It seems play and floor therapy are far better choices.
This line was very powerful: “By letting neurodivergent people stay who they are and want to be, you’re allowing them to flourish into the person they are happy to be.”
We’ve got a long way in rethinking neurodiversity and changing the way children, especially girls, are diagnosed and treated.
I look forward to reading part three next week.
Thank you so much for such a thorough and thoughtful response. I agree with you completely. It seems to me that we get caught up doing things “the way they’ve always been done”, even when the way things have always been done isn’t always the best way. Examples such as the traditional school system–how much has changed in our understanding of how humans learn yet much of the education system revolves around the traditional established program–same with the 2-party political system. ABA therapy is so fundamentally ingrained as the therapy of choice through Autism Speaks that I think people have trouble stepping back and seeing the long-term problems associated with it. “If we throw all kids in the lake, and half live, we must be doing something right!” It seems to me that neurodiversity is more common than neurotypical, the problem being that it’s divided into so many subsets and there is still stigma, so more people feel alone. I’m certainly part of the neurodivergent community, just not sure where I fit within that community, and that’s okay. If we, as you said, rethink neurodiversity and change the way children are diagnosed and treated, we will do better for our children and they will have understanding as they grow.
Many decades ago, while just beginning my undergraduate era, one of my professors wrote a book “The Adjusted American” with a premise that’s stayed with me and echoes Isabella’s train of thought; the goal of individuals is to fit in, whether or not it’s adjusting to high school, a prison, a job, or simply any social institution. Those who haven’t learned thesee social intricacies are branded as social outcasts in need of therapy.
I recently read a book review on “A Different Kind of Normal” (by Aigail Balfe) geared to children and young adults who much like Isabella never quite felt normal. The author was diagnosised as autistic when an adult and who works in TV and film in England. The article is in the book review section of last Sunday’s New York Times.
I admire Isabella’s introspection which she apty described her struggles to deal with the pressures to fit in and society’s apparent aim to “cure” her. Her essays reveal an amazing multitalented young woman.