A Letter To Parents of Newly Diagnosed Kids

One of our speakers at the Empower Autism conference this year, Ben Mason, wrote this letter to a family member of his who’s child was recently diagnosed with autism. Ben is one of the kindest, most thoughtful people I’ve had the privilege of working with. He is also autistic, married, and employed, all of which I mention with his permission. Please share this letter with those who might benefit from the perspective of an adult with autism!

Dear Parent,

Your child’s diagnosis must raise many questions. I can only imagine your perspective, confronted with the anxiety and uncertainty of a forest of information, politics, and popular culture. Looking in from the other side – being autistic – is a very different experience. From both sides, though, given enough patience, many of the most important and personal questions answer themselves over time, and we find ourselves leading extraordinary, productive lives.

As an autistic adult, I often consider what responsibility we have to inform future autistic generations. Many of us share a great deal in common. We tend to understand each other’s personal challenges more intuitively. In isolation, we tend to make the same mistakes. As we mature, we often come to overlapping insights and criticisms of the world around us. When brought together, we represent a vibrant and productive culture that celebrates individuality and thrives on a multitude of unique strengths.

From this, I strongly suspect that the key to living with autism is forgiveness and acceptance. Understand that it isn’t your or anyone else’s fault. Your child is still themselves, and will live their whole life through the lens of autism. This can be really hard. But, the most powerful tools for finding peace with autism are some of the best for coping in life: curiosity, positive attitudes, and a growth mindset. Over time, this attitude will serve both you and your child well as you begin to understand who they are, and how they relate to the world.

While our culture’s social, clinical, and popular perspectives of autism have evolved greatly over time, it’s still not given that kids with ASD make it safely to productive adulthood. Autistic children may enjoy a host of services, but there are very few programs or practical supports for autistic adults. Autistic unemployment, homelessness, and incarceration rates are much higher than average. Our life outcomes tend to be more heavily biased by socio-economic status, opportunity, prevailing politics, and the local norms of gender and racial equality. Many of us do well, but still carry heavy psychological scars.

On some level, this is a struggle we all share. We all work to find our own path through life. For autistics, though, this journey is different in important physical, cognitive, and emotional ways. In my own life, I’ve found that working to understand and respect these differences has had a great impact on both my well-being and the quality of my relationships. Counter-intuitively, the greatest lesson may be that autism tends to enable a profound sensitivity and sense of empathy that is especially hard to communicate, and easily misunderstood.

Current research shows that autistic differences run deep: it’s clear that ASD isn’t a disease, but a group of related traits that are [often] passed between generations. These traits lead to changes in the early and ongoing shaping and development of key brain structures, producing an individual with a unique perceptive and expressive ability. While autism becomes a disorder when these differences lead to social difficulty, there is often great potential hidden among the quirks.

Even though autistics are generally billed as “antisocial”, there are plenty of outgoing, extroverted autistic people. Many of us love making friends and meeting new people, but have difficulty growing and maintaining relationships. These issues tend to stem from dramatic differences in interests and communication styles. In this regard, peer-level social coaching can be transformative. I highly recommend encouraging your child to seek out friends who “fill in” their social blind spots and advocate for their differences. My wife does this for me, and it has had a profound impact on every personal relationship I have.

The major challenge of autistic life, in a practical sense, is the delicate compromise of learning to balance outward accommodation against internal adaptation. Learning new skills and coping strategies can beat social and environmental obstacles. But, it is just as important to recognize important triggers and sensitivities, and teach others to understand and work with your child’s limitations and strengths. It is often most productive to seek some accommodation, and focus time and energy on building key strengths and skills. This requires some diplomacy, but avoids the stigma and lost effort of “normalizing” natural autistic behaviors through excessive therapy.

As they mature, your child may begin to show certain aggressive or repetitive behaviors as an instinctive form of self-defense against frequent stressors. For example, many autistics avoid eye contact because it hurts or interferes with thinking. Sudden environmental changes can trigger episodic panic or melt-down. For some, loud sounds, strong smells, and bright lights cause severe physical distress. Repetitive physical actions, such as “stimming”, flapping, vocalizations, or “tics”, may provide hints that your child is reacting to stress, and needs help or time to cool down.

Navigating sensory overload is different for everyone, but usually takes the form of physical practices (like using earplugs in a noisy room). I’ve found a lot of benefit in mindfulness techniques like meditation, yoga, and structured breathing. I manage daily stress through running, and take care not to over-extend my mental energy. Sensory-related stress management can also extend to diet, by limiting or eliminating known physical stressors such as cured meats, preservatives, artificial colorings and flavors, lactose, antibiotics, and excess sugar.

Often, as when facing bullying and stigma, autistic melt-downs may be a pure expression of self-preservation. Knowing this, it’s vital to pay close attention to institutional settings like schools. The repetitions of daily life away from home can amplify simple stresses into long-term problems. In some schools, strict codes of “accountability” and conformity unintentionally punish autistic behaviors. Bullying may also extend to adults, as frustrated faculty can expose autistic children to emotional abuse, restrain them in isolation, or punish them in public ways.

This isn’t to excuse harmful or disruptive behaviors, but to emphasize mediation through understanding and communication. If you find yourself at a behavioral impasse, I highly recommend assuming competence first. Question the environment. Consider subtle sensory issues like ticking clocks, room temperatures, clothing and food textures; or background smells like laundry detergent, bleach, and perfume. Socially, unresolved or hidden frictions with other students and teachers can create a great deal of stress. While issues can get complicated, lasting solutions are found by emphasizing resolution, mindfulness, and skill building over behavioral modification and rote conformity.

As policy evolves, mediation and accommodation have become more commonplace in public settings (consider the recent supreme court ruling on schools). However, institutions still tend to fixate on specific behaviors and policies while ignoring underlying causes and issues. For autistics, this echoes a very dark history of institutionalized discrimination and oppression. Because of this, personal and political advocacy continues to play a key role in the well-being of autistic people on every scale. Many have fought for decades for the recognition and acceptance of autistic people in policy and politics. Our continued well-being is tied to these efforts, and active participation is worth consideration.

Given the recent flurry of published studies, there is a quickly growing body of good information on autism. When building your social and support connections, though, I urge a certain level of caution. There are vocal organizations and groups who thrive on maintaining the fear and stigma associated with autism, and do so with great harm to autistic people and our culture. Similarly, there are fringe clinicians pushing disproved disease models of autism to capitalize on false cures, therapies, and treatments (that can and do kill). It pays to do some homework.

I understand that this is a ton to take in. The bottom line is that you’re child isn’t broken. There are no missing pieces. They will, however, enjoy an unusual developmental trajectory. As their parent, you have the opportunity to advocate for their specific needs and development, and manage the institutional demands that will challenge or antagonize their natural behaviors. You have the chance to help your child discover who they are as a unique individual. Doing so will require helping them learn to satisfy their needs, while getting by in a world that often isn’t tolerant of quirks.

—- Factoids:

– Most people without autism are called “neurotypicals”. Some people with asperger’s syndrome call themselves aspies. I am an aspie.

– There is no autism epidemic. Evidence suggests that a greater clinical and public awareness has lead to higher rates of diagnosis.

– Vaccines do not cause autism. Heavy metals do not cause autism. There are no cures for autism.

– The world’s most foremost expert on your child’s behavior is your child. Most parents of autistic kids are not experts in autism. Neither are most primary care physicians.

– Stimming refers to healthy self-stimulation, usually of surface nerves and pressure points, to relieve stress. It can range from pinching between fingers, to arm/wrist “flapping”, hair pulling, and full-body spinning. It is normal autistic behavior.

– Many non-verbal autistic people are highly intelligent, and capable of rich communication through assistive technology.

– There are no medications that can treat the underlying conditions of autism. Nearly all psychotropic drugs are less therapeutically effective for autistic people, with more pronounced side effects. This includes caffiene and illicit substances.

– The blue ‘autism puzzle piece’ is divisive in autistic communities. Originally created by Autism Speaks as a marketing device, some parents use it as a sign of solidarity. Many autistic people take issue with it’s references to incompleteness – that we’re not simply different, but “less-than” others.

– ASAN is the Autistic Self Advocacy Network. Their motto is “nothing about us without us”, and is a direct challenge to global initiatives and policies dominated by non-autistics.

– Many austic people get married and have kids.

– While there is significant evidence that autism is as old as humanity, a higher mortality rate keeps our median age low and our culture young.

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