Finding Patience… When It’s Just So Hard
April 8, 2025April: Autism Awareness
By Carol S. Siege, PCC
Founder, Family Pathways Coaching, LLC
As we approach the end of April and Autism Awareness Month, let’s talk about autism in all its forms. And really, autism -- as it is defined today -- shows itself in many, many ways.
Autism Spectrum Disorder (ASD) is defined by the National Institute of Mental Health as “a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave.” Those diagnosed on the spectrum are more likely to also struggle with ADHD, anxiety, and depression, along with medical conditions like sleep disorders, obesity, and gastrointestinal issues.
Individuals who are most acutely affected by autism may never live independently, may always struggle to communicate, and may also experience severe medical conditions like epilepsy, which is more common among autistic people with an intellectual disability, according to leading autism researchers like Autism Science Foundation (ASF) and Simons Foundation Autism Research Initiative (SFARI). A parent raising a child with more profound autism often must navigate personal obstacles, like family outings that go painfully awry, as well as bureaucratic juggernauts that complicate housing options, social security benefits, and participation in day programs.
Three of my four sons fit somewhere on the autism spectrum, from mildly to moderately affected. I expect them to live independently, hold jobs, and (hopefully) share their lives with someone special. They are lucky in many ways, not least of which is growing up at a time when there is much more understanding and acceptance about how differently some people interact with the world around them.
Increasing autism diagnoses and research into what causes autism can be complicated and controversial, but the attention can also help improve integration and understanding. Colleges provide spectrum support within their Disability Services Programs, employers recognize the benefits of individuals who can think outside the box, and communities make room for those who present differently.
And yet, life on the spectrum can be genuinely challenging. Whether toddlers or teens, sensitive ears and bodies and psyches can cause significant problems. Temper tantrums, rants, refusals, and an inability to articulate needs and wants can make a parent’s life feel like a never-ending, complicated human maze. What’s going to soothe, and what’s going to exacerbate? What’s going to supercharge, and what’s going to deplete?
These challenges can tear a family apart… but they don’t have to.
Raising a neurodiverse child, specifically an autistic child, requires patience, appreciation, and community support, wherever you can find it. Listening is the number one skill we continue to emphasize in my home, along with humor and kindness. And never underestimate the power of maturity and self-awareness.
Over the years, raising my now nearly grown sons, I have come to understand my boys’ unique personalities, and as a family we have created our own ways to cope with the difficulties that arise.
On the lighter side, when one of my sons – whose imperfect filter led to many inappropriate comments and jokes – we came up with the code word “guardrail.” Whenever his jokes were “over the line” – that is, about to hit the guardrail – we discreetly offered this word, and he understood. There was no shame, and eventually, the word became an inside joke that he enjoyed being a part of, sometimes now even employing it himself.
Puberty required very specific lessons about personal hygiene, personal space, and physical attraction. If you think it can be tricky explaining the birds and the bees to your typical child, imagine doing it with someone who a) takes everything literally (be direct!); b) is curious but naïve (be sensitive!); and c) is farther ahead physically than they are emotionally (stick with the basics!).
We have also had to navigate driving accidents, financial scams, political extremes, and some truly irrational behavior. The key seems to be separating the behaviors from the person. We all make mistakes, and growing up with autism sometimes makes the world and the people that inhabit it confusing. We try to address issues as they arise, and we continue to learn and try to improve. Sometimes that means validating emotions we don’t understand but recognize are still real. Often it means appreciating the little things. And it always requires putting off serious discussions until after a temper tantrum has subsided.
In the same way my youngest son -- who stands a half foot shorter than his three older brothers – wouldn’t choose to be small, I don’t think my sons would choose to be autistic. And yet, they are all comfortable with who they are. They recognize their gifts, they accept their challenges, and they work to be their best selves. Just as each one of us can do, as well.
