Autism Research for the Autistic Individual – Part 3

Art by @isobell.dohn.art, the cracked image of societal expectations, especially in regards to autism/ Loscotoff 2022

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.

Art from @isobell.dohn.art, a drawing in blues show a young man crying used for an article on autism/ Loscotoff 2022
Art by author and artist @isobell.dohn.art

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. 

Bio

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

Art by @isobell.dohn.art, the cracked image of societal expectations/ Loscotoff 2022
Art by @isobell.dohn.art on Instagram

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 Centerwww.sprc.org/news/suicide-risk-among-people-autism-spectrum-disorder. Accessed 19 Oct. 2022.

“Suicide Statistics and Facts –.” SAVEsave.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.

Autism Research for the Autistic Individual – Part 2

Art by @isobell.dohn.art in a research paper about her own diagnosis of Autism at the age of 16 / Loscotoff 2022

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.

A girl in a purple dress sits on an isolated island, art by @isobell.dohn.art / Loscotoff 2022
Art by our guest author, @isobell.dohn.art on Instagram

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

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.

Art by @isobell.dohn.art in a research paper about her own diagnosis of Autism at the age of 16 / Loscotoff 2022
Art by my guest author, @isobell.dohn.art on Instagram

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 Centerwww.sprc.org/news/suicide-risk-among-people-autism-spectrum-disorder. Accessed 19 Oct. 2022.

“Suicide Statistics and Facts –.” SAVEsave.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.

Autism Research for the Autistic Individual

Image by @isobell.dohn.art / Loscotoff 2022

Intro

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.

Image by @Isobell.dohn.art / Loscotoff 2022
Art by our guest writer, @isobell.dohn.art on Instagram

Autism Research for the Autistic Individual – Part 1

The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.

Dr. Temple Grandin

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

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

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.

Image by @isobell.dohn.art / Loscotoff 2022
Art by our guest writer, @isobell.dohn.art on Instagram

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.