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When Autism is Invisible to the World

December 9, 2020

I will always be grateful to my aunt, an occupational therapist, for being the first one to suggest that a person in my life may be on the autism spectrum.

When Autism Is Invisible To The World

He had no language delay, and a normal IQ, which I incorrectly believed ruled out autism. I was ignorant and in complete denial, which unfortunately, cost years of potential treatment time, and caused years of turmoil.

Before the ASD diagnosis, I thought his attention deficit hyperactivity disorder could explain everything; like his problems with handwriting, homework, and friendships. Yet, I could not understand why he couldn’t tolerate crowds, shopping malls, unfamiliar foods, new people, new clothes, loud sounds, the list goes on.

Most of all, I could not understand why he regularly had fearsome, almost feral “tantrums” which I now understand were autistic meltdowns. Maybe the worst part was that I thought he chose these behaviors in order to get his way.

Counselors advised me to hold firm about whatever ostensibly caused the tantrum (like his not wanting to drink from the new cup), and to use a sticker chart to reward good behavior. I still feel waves of remorse when I think about my lack of understanding.

Many people do not understand that ASD is not always visible to the outside world. Some individuals with ASD may have noticeable differences in behavioral, communication, or physical skills, but many do not. Some also have co-occurring diagnoses that may or may not be apparent to others.

When a child’s ASD is invisible to the untrained eye, parents and children can face special challenges, such as unaccommodating teachers, judgmental family members, and dismissive health care providers. These challenges can potentially undermine a child’s ability to get the care and understanding he/she needs.

Perhaps worse, parents may also miss the “signs” or end up questioning their instincts when they suspect autism—leading to years of missed opportunities for therapy, misunderstandings, and frustration for everyone. If the growing number of memoirs by women not diagnosed until adulthood is any indication, it is troublingly common for girls on the spectrum to fall into this category.

If your child is (or might be) an “invisible Aspie,” you can take steps to build support and reduce the turmoil:

1. Educate yourself

Signs and symptoms of ASD, or co-occurring conditions, can be vague and subtle, such as difficulty with social situations, intense focus on special interests, and sensory issues. Anxiety and depression also commonly accompany ASD. Your child may be experiencing some of these challenges but has kept them from you possibly out of fear, or a lack of understanding that a symptom is atypical, such as stimming.

2. Consider getting an official diagnosis

If you only suspect your child is on the spectrum, but do not have an official diagnosis, you may want to pursue it since schools are not obligated to provide accommodations, and health insurance companies may not pay for services otherwise. Although, you may still face additional hurdles, a diagnosis is the key that unlocks many kinds of support. Ask your child’s doctor where to seek a diagnosis. You can also investigate children’s hospitals in your area. It is interesting that many parents find out they are on the spectrum after their child is diagnosed.

3. Know your rights

You should become familiar with parental rights for children with disabilities at the school district, state, and federal levels. It is likely at some point in this parenting journey that you will need to advocate for your child, and knowing how the law supports your rights can be instrumental in being a successful advocate.

4. Create a list for care providers

It can be very helpful to keep a list on hand that details the unique characteristics, challenges, and needs your child currently has. Teachers, caregivers, and health care providers will need to know this information in order to better serve your family. For example, it is important for your school to understand how your child’s disability impedes her or his ability to receive an education. Without that, it may be difficult to get sufficient accommodation. The list may vary depending on whether it is for a teacher, doctor, etc.

5. Find a supportive network

A good psychologist or therapist who specializes in working with individuals with ASD is invaluable not just for your child, but for your whole family. Connect with supportive family and friends, or even an online support group. A well-run social skills group can be a boon for your child, but other suitable groups may abound in your community, such as a youth book club at your local library, or game night at a coffee shop. Many parents become skilled at spotting their child’s “people.”

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6. Help your child understand and celebrate his or her uniqueness

Knowledge, in the appropriate amount, at the appropriate time, is powerful for a child who may wonder why he/she experiences the world differently than neuro-typical people. Try to frame ASD as something that also comes with strengths and not just challenges. Expose your child to positive, affirming people, books, movies, and other role models.

These suggestions can help parents of those whose ASD is not apparent to the outside world, but who still need care and support. I think one of the biggest challenges is that invisible Aspies are often very good at appearing to be okay—even when they’re not. They are so good at appearing to be okay, in fact, no one around them may know there is a problem until it manifests in a potentially damaging way—such as conflicts at school, depression, etc.

Although I am still learning about ASD, understanding the why and the when behind challenging behaviors has made a tremendous difference in how I respond. By becoming better informed, I am a better advocate for the invisible Aspies in my life, and my hope is that someday they will advocate for themselves as well.

Further Reading:

“Signs of Autism in Infants and Children” https://www.autismparentingmagazine.com/signs-of-autism-children/

“Asperger Syndrome Information Page” https://www.ninds.nih.gov/disorders/all-disorders/asperger-syndrome-information-page

“Autism Spectrum Disorder (ASD) Diagnostic Criteria” https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

“Individuals with Disabilities Education Act: Parents and Families” https://sites.ed.gov/idea/parents-families/

This article was featured in Issue 100 – Best Tools And Strategies For Autism

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