My family’s personal journey to greater autism awareness

While I cope with hereditary angioedema, Ehlers-Danlos syndrome, and other conditions, I’ve also been touched by a less rare condition that’s not a disease: autism.

The first time I learned about autism, I was in college studying for my education degree. I took a psychology course that mentioned various disorders and their effects on children. The only autism description was for the severe, nonverbal, catatonic variety.

In the late 1980s, more people learned about autism from the popular movie “Rain Man,” which featured Dustin Hoffman as an autistic savant. Kim Peek, on whom the character was based, wasn’t actually autistic, but he did have savant syndrome and amazing abilities.

In 1987, I heard a National Public Radio program discussing the growing prevalence of autism diagnoses. It explained some of the more prominent characteristics of the disorder, such as being born male. I noted how the eerily familiar characteristics seemed to describe my oldest son, Dorian.

Recommended Reading

April 7, 2025 News by Andrea Lobo

Autoimmune conditions, allergies, asthma more likely in HAE: Study

A journey begins in earnest

I immediately looked up the defining criteria for autism. I was astonished by the list, as my only previous knowledge of how autism presented covered much more severe symptoms. I printed out the list and shared it with his dad, asking if the criteria seemed to apply to anyone he knew. His immediate response? “Dorian.”

We’d been noticing signs for years, but both of us were quiet and introverted people with special interests, so we didn’t think much about it. Dorian’s hands would flap on occasion, but it only seemed to happen when he was overstimulated. Since we were also overstimulated occasionally, we brushed it off as a coping mechanism.

Agreeing that a diagnosis might help him receive accommodations at school, we took him to a pediatrician. Being a military family, that meant military doctors. No disrespect to military medicine, but in my experience we rarely saw the same doctor twice, much less have one follow our children throughout childhood. That lack of continuity meant doctors had almost nothing beyond our observations to go on, and from their observations, they didn’t see a point to test. Thus, Dorian didn’t receive a diagnosis.

After I spent years educating myself about autism, Dorian began to struggle at school. At age 9 he was finally diagnosed with autism by a private developmental pediatrician.

That wasn’t the end of our autism journey, though. When we adopted Leah from Ukraine, we knew she had developmental delays. We homeschooled her, which gave her a personalized education. By the time she was in high school, though, her serious, chronic, multiple rare diagnoses required me to become a full-time caregiver.

At that point we reached out to the public school system for help with her educational needs. The system required her to undergo academic and psychological testing, and that’s when we mentioned the possibility of autism. It turned out she did show signs of the condition, but the schools denied all services.

We returned to the private sector for professional psychological testing, which confirmed she was indeed autistic. The following year, I received my own autism diagnosis from the same diagnostic center.

That confirmation was overwhelmingly freeing! It explained my lifetime of struggle to fit in and challenges with social situations, as well as my shame over my differences and unusual behaviors. Letting go of over 50 years of pent-up issues also helped with my mental health, depression, and anxiety. Now I’m just another eccentric old lady, loving life.

Through amazing research, we now know that autism is sometimes linked with autoimmune issues and connective tissue disorders, including my own Ehlers-Danlos. To me, then, it’s no wonder our family is filled with chronic health conditions, rare diseases, and neurodiversity.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.