Things I wished my parents would have known about autism
Written by Autiblog. You can follow them on Instagram to learn more about Autism @autiblog
In all likelihood, you have met one autistic person in your life. Either because you have an autistic kid or you know someone who has a distant relative on the autism spectrum. In the United States, 1 in 54 kids aged 8 years is autistic, according to the last surveillance of 2016 [1]. By definition, autism spectrum disorder (ASD) is a developmental disability characterized by persistent impairments in social interaction and the presence of restricted, repetitive patterns of behaviors, interests, or activities [2]. Despite being associated with childhood, autistic kids grow into autistic adults, that being my case. Sadly, there is still so much misunderstanding regarding autism, so I would like to tell you what I wished my parents would have known, and no one told them.
1. It is not your fault.
Autism is not something caused by bad parenting. Or vaccines. Actually, the exact cause is not known [3]. This means that autism is not a state of mind or a phase but rather how the brain is wired. As it runs in families, many parents discover they are undiagnosed autistic only after their child’s diagnosis.
In addition, the spectrum is not linear from low-functioning to high-functioning. In the same way you have your own set of skills and difficulties, each autistic individual will have their own spectrum of skills and challenges.
2. It is not a label. It is a diagnosis.
The majority of autistic adults prefer identity-first vs. person-first language. In a recent study, the term “autistic” was chosen by 61% of the 502 autistic individuals, whereas “person with autism” was preferably endorsed by professionals [4]. Furthermore, an online survey of the autistic community on Twitter reported that 86.7% chose the “autistic” denomination over “person with autism” of a total of 2471 votes [5]. For us, autism is not a removable accessory; we were born like this, and it is intertwined in our identity.
I know that you would fail all your exams at the psychology or journalism school for calling someone autistic. However, did any of those ask autistic people how we prefer to be named? So many times, associations and professionals co-opt autistic voices, which is patronizing and ableist. Just listen directly to us and adhere to our self-determination. Further, many autistic adults know what is best after years of trial and error. We want to spread our knowledge and help others from a first-hand point of view. The best resources are on the internet under the hashtags: #ActuallyAutistic and #AskingAutistics.
3. Changing the phone case of your Samsung won’t make it an iPhone.
Neurodiversity means the natural diversity of human beings. This term was coined in the 90s by the autistic activist Judy Singer to transcend autism’s pathologized vision. Neurodiversity is displayed as neurotypical (NT) and neurodivergent (ND) people, the latter including conditions from autism to dyslexia. Hence, autism is not a bad word. We are not defective NT. No cure is needed because it is not a disease. Pretending to change our essence can only lead to more frustration and burnout of the autistic person. Autism, as an invisible disability, doesn’t materialize in how much “autistic” you look. There is no an “autistic look”, only a stereotyped look. And telling someone that “they don’t look autistic” is ableist. You don’t have the right to diagnosed us or not (unless you are our health practitioner). This leads me to Applied Behavior Analysis (ABA) therapy.
ABA therapy bases on the cruel premise of turning autistic people into socially accepted persons. Developed by psychologist Ole Ivar Lovaas in the 1960s, it is sadly the most popular therapy worldwide. This “therapy” focuses on “autism-like behaviors” to “fix” them. ABA suppliers discourage stimming —the way we autoregulate— and they reward what they suppose NT behaviors. This means that ABA therapists consider autism as a non-valid condition instead of embracing neurodiversity. Scientifically, there is no strong evidence for its benefits [6], and more importantly, it increases the risk of trauma or PTSD [7]. If you already sent your beloved ones to ABA therapy, you have time to reconsider. Your child only needs to be accepted and understood, not fixed.
4. Non-speaking communication also is communication.
Speech is not a superior form of communication. Many autistics rely on pictograms, writing, sign language, or Augmentative and Alternative Communication (AAC) technology apps. And all of them are valid. Interestingly, we tend to fully understand to other autistic people and only struggle to interact with NT people [8]. It seems to be like autistics speak in one language and NT in other. This is explained by the double empathy problem, which claims that the difficulties arise due to neurology differences [9].
Autistic folks tend to be more direct and literal with our words. In case of a sensory overload and exhaustion, we may go into mutism mode due to not having any energy left. Forcing an autistic kid or adult to communicate only the way you expect them to do only leads us to frustration and the feeling of being misunderstood. The communicative responsibility should not fall solely on autistic people. Communication requires effort on all sides.
What happens when we learn NT “language” in early childhood is that we try to mask our communication methods and try hard to imitate your manners. Therefore, we can pretend to make eye contact, make more facial expressions, use irony, etc. We do this because we were told to repress ourselves during childhood:
“Look me in the eye”,
“Stay still”,
“Be quiet”,
“Don’t do that”...
All of those are remarked with emphasis to autistic children. Consequently, we interpret that our natural and spontaneous behaviors are wrong and that we are defective, which leads to feelings of rejection and low self-esteem.
Thus, it is not desirable to change our behavior, as the consequences are miscommunication and a detriment to mental health. Furthermore, masking is extremely exhausting, and more often than not, we are not paying attention. To me, eye contact is very intimidating and distracting, a bit like staring directly into the sun. I can’t concentrate on the conversation, and I start stuttering after that transient blindness. Looking away helps me gather my thoughts and articulate my message much better.
5. Sensory issues are an issue.
In my case, I have an auditory processing disorder, which means that my brain doesn’t filter human voices from the background noise. In crowded and noisy places like bars or public transport, I can’t follow the ongoing conversation, making communication challenging. Besides, noisy places affect our anxiety levels. That is why many of us wear noise-canceling earbuds and prefer quiet places. It can be exhausting to live in a world solely adapted to NT, a society that ignores our needs. In this regard, it would be constructive not to second-guess our sensitivities and try to do your part to make our lives easier. For example, by creating a quiet environment, covering the windows if it is too bright, and letting us time to process the information.
6. Meltdowns are not tantrums.
When facing a dangerous situation, humans go into flee, fight or freeze mode. If escaping is not an option, only fight or freeze are an option. Meltdown is the equivalent of a fight response in a highly distressing situation or environment. We are not trying to manipulate you into getting what we want. It is just an involuntary anger explosion due to not knowing how to cope with sensory overstimulation and overflowing negative emotions.
Shutdowns, on the other hand, are the freeze reaction. They are inward meltdowns, physically and emotionally draining, but we seem to be unresponsive on the outside. We struggle to communicate as we usually do, and we shift into survival mode. Shutdowns are not more “convenient” just because we don’t show any disturbing behavior. Creating an environment with low social demands and low sensory stimuli may prevent meltdowns and shutdowns.
7. Stimming is very much needed.
Stimming is any repetition that involves the body senses. It serves us mainly to communicate and regulate emotions. Stimming is also helpful to prevent meltdowns and shutdowns. It looks like clenching your fists, rocking, finger tapping, biting your lips, humming, watching the rain fall, and so on.
Remarkably, NT stim too: twirling your hair, bouncing your legs, or fidgeting a pen are regulatory behaviors seen in both NT and autistic people. The fact that rocking or balancing on your toes looks “weird” to you is only in your eyes. Stimming also is a way to communicate positive emotions, like being incredibly happy and hand-flapping. Changing the way we self-smooth and express emotions will only lead to frustration, feelings of rejection, and repressed anger. There is no point in changing our behavior unless it is harmful to ourselves or others, e.g., skin-scratching.
8. Autistic girls and BIPOC exist.
The main stereotype of an autistic kid is male and white. However, autistic girls and BIPOC exist too. These race and gender biases in the diagnosis hinder many of us from reaching a proper detection on time, which may worsen our mental health due to unmet accommodations and needs. Furthermore, if the diagnosis delays long enough, some of us may reach adulthood undiagnosed or misdiagnosed. Early detection and knowledge are vital for your kid’s wellness. If you are hesitating to tell them their diagnosis, don’t doubt it; they categorically need to learn their condition. Otherwise, they will feel the exact same outcast but without knowing why. To many of us, obtaining a diagnosis was a release. Deep down, we knew we were different but couldn’t pinpoint it.
Although it is frown upon among health professionals, the autistic community accepts self-diagnoses in adults. Accessing the official diagnosis may not be possible under some circumstances: the common causes are economic reasons and the prevalent stereotypes in incompetent practitioners. By no means am I implying that professional help is not required. Just beware that not everybody can access it.
9. Emotional and sexual education is always a must.
Neurodiversity often brings along gender and sexual diversity. Gender is a social construct created by NT, which means that autistics may not feel attached to normative NT gender expressions. For example, 1 in 7 autistics are gender diverse (transgender and non-binary) [10]. Being a minority inside a minority can bring more discrimination and poorer mental health. As a result, trans and non-binary folks suffer higher rates of depression and anxiety among the autistic population [11].
In terms of sexual orientation, around 10-20% of autistics are asexuals [12], which means a lack of sexual attraction towards other people, or only under specific circumstances, e.g., close emotional connection. However, the rest of autistic people feel sexual attraction, so it is a myth that all of us are asexuals. In any case, sex education is imperative.
Sadly, we are more vulnerable to abuse. Autistic adults have three times the likelihood of being sexually assaulted or raped [13]. We need to learn strategies to help us prevent these situations. And sexual perpetrators need to hold accountable. It is not okay to take advantage of our vulnerabilities. Thus, sex education is a must, and it needs to be explicit. Further, it needs to cover sexuality and gender identity.
10. Bullying is a real problem.
44% of us got bullied at school, in contrast with the 10% of non-autistic children [14]. Mocking us for being autistic is rarely the case. Still, typical teasing includes that we are picky eaters, don’t like loud noises, stim, take things literally, don’t know how to socialize, and so on. Schools should be responsible, and yet, they usually don’t enforce the proper protocols, which requires the bullied kid to leave the school. The bullies’ parents are also accountable, as they should model by embracing diversity and tolerating otherness.
Sadly, bullying is not limited to school, as it may extend to our workplace. Autistic adults have 2.7 times the likelihood of experiencing emotional bullying by coworkers [13]. Dealing with rejection the whole of our lives can become a mental health challenge. In many cases, we can develop rejection-sensitive dysphoria, which is an extreme stress and emotional response to rejection. Thus, autism awareness is critical, but let’s take a step further into acceptance. The world needs to be more inclusive and welcome the differences.
Conclusion
In conclusion, there is still a lot of myths and stigma around autism. We are trying to survive and thrive in a world made by and for NT. Now is your turn to take action in breaking the stereotypes and fighting for social justice. Neurodiversity is part of natural biodiversity, and we all should embrace it. It doesn’t matter whether it is your child or the neighbour’s child, autistic people deserve respect.
I would like to finish by saying that we often focus on the drawbacks and inconveniences, but there are some advantages to being autistic. For example, we are honest, creative, and passionate about our interests. We have a unique way of perceiving the world, a great sense of justice, and photographic memory. We feel a connection with nature and have the ability to hyperfocus. And you, what do you love about your autistic children or acquaintances?
References:
Maenner MJ, Shaw KA, Baio J, et al., Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ 2020;69(No. SS-4):1–12.
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013
Amaral DG. Examining the Causes of Autism. Cerebrum. 2017;2017:cer-01-17. Published 2017 Jan
Kenny L, Hattersley C, Molins B, et al., Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2016 May;20(4):442-62.
@NeuroRebel in Twitter, March 18, 2021 https://twitter.com/NeuroRebel/status/1372544410160930818?s=20
Rodgers M, Simmonds M, Marshall D, et al. Intensive behavioural interventions based on applied behaviour analysis for young children with autism: An international collaborative individual participant data meta-analysis. Autism. 2021; January.
Kupferstein, H. "Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis". Advances in Autism. 2018;Vol. 4 No. 1, pp. 19-29.
Crompton CJ, Ropar D, Evans-Williams CV, Flynn EG, Fletcher-Watson S. Autistic peer-to-peer information transfer is highly effective. Autism. 2020;24(7):1704-1712.
Milton D. On the ontological status of autism: the ‘double empathy problem’. Disability & Society. 2012;27(6). pp. 883-887. ISSN 0968-7599
Walsh RJ, Krabbendam L, Dewinter, J et al., Brief Report: Gender Identity Differences in Autistic Adults: Associations with Perceptual and Socio-cognitive Profiles. J Autism Dev Disord. 2018;48:4070–4078.
Murphy J, Prentice F, Walsh R, et al., Autism and transgender identity: Implications for depression and anxiety. Research in Autism Spectrum Disorders. 2020;Vol 69:101466. ISSN 1750-9467
Ekblad, L. “Asexuality: A Possible Background and How It Relates to Autism and Neurodiversity.” PsyArXiv. 2018;August 13.
Weiss JA and Fardella MA.Victimization and Perpetration Experiences of Adults With Autism. Front. Psychiatry.2018;9:203.
14. Maïano C, Normand CL, Salvas MC, et al., Prevalence of School Bullying Among Youth with Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. Autism Res. 2016 Jun;9(6):601-15.