As parents of children with autism, we try to do what’s best for our kids, but it somehow feels like we’ve never done enough. We love our children and want them to be happy and healthy, but we tend to fear the future. Some people might say that our fears are unfounded.
The research proves otherwise. Clinical and population-based studies of those with autism report poor long-term outcomes regarding education, employment, independent living, and peer relations.1
Some research is even more troubling. In 2017, an analysis was done on causes of death for individuals with autism in the U.S. between 1999 and 2014.2 The mean age at death for individuals with autism in the US was 36 years old, compared to 72 years old for the general population. Our children are dying so much sooner than they should.
Researchers in Sweden also investigated life expectancy and were able to do further analysis.3 These researchers looked at people in Sweden that died between 1987 and 2009 and had a diagnosis of autism, Asperger’s syndrome, atypical autism, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), or other childhood disintegrative disorders.
The average age of death for those with autism was 54 years old, whereas individuals in the general Swedish population died at an average age of 70 years. They studied severity and discovered that the most common cause of death in the low-functioning group was epilepsy. In contrast, the high-functioning autism group had a significantly more elevated suicide risk.
The researchers concluded: “Thus our results add to the accumulating evidence indicating that ASD accounts for substantial health loss across the lifespan.”3
Autism is a spectrum, but decreased life expectancy is universal for those on the autism spectrum, which is why having a great doctor is imperative.
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Here are three ways to know if your child needs a new doctor:
Your child’s doctor dismisses diagnosis and health concerns
Years ago, when my daughter had severe autism, her quality of life was very low. When I asked certain doctors what we could do about her variety of symptoms, I was told: “That’s just autism.” That was not an acceptable answer for me (or for her). My intuition told me that doctors who answered like that were not interested in finding out what could help my daughter be happier and healthier.
I couldn’t believe that things like stomach pain, lack of sleep, headache, diarrhea, constipation, sensitivity to light, sensitivity to noise, not feeling pain, and being unable to sit still could be written off as “That’s just autism.” Was I expected to watch my daughter experience all this for the rest of her life while doctors ignored my concerns and showed us the door?
You’ve been given a prescription without a plan
Sleep problems, anxiety, depression, and many other issues can be big problems for our children. Sometimes a caring doctor will give you a prescription to target the issue. Medicines can be great in the short term, but what’s the plan for the future? If sleep is an issue, does your doctor just expect your child to be on sleep medication for the rest of their life?
That doesn’t make sense. We want our children to be happy and healthy. If there is a problem big enough to warrant prescribing medication, then the cause of this problem should be addressed as well. A prescription is an immediate solution, but our children also deserve a long-term solution.
You are required to see the doctor in person for every appointment
Many times, it is not easy to get our children to go to appointments. Their schedules are disrupted, they miss school, and we miss work. Everyone’s stress levels are increased. We’ve got parking issues to worry about, and then waiting in the waiting room can be challenging, to say the least.
Sometimes there are sick children in the office, and our kids are exposed to needless germs. We don’t need anything else to worry about as parents! In-person doctor’s visits for every appointment is such an old way of doing things. Why stress our children and ourselves even more by physically going to the doctor’s office, especially when many times we walk out of there deflated and unheard.
Choosing the right doctor for your child
If your child needs a new doctor, then I would recommend looking for a functional medicine doctor. Functional medicine views health from a different perspective. It focuses on how and why illness occurs and restores health by addressing the root causes of disease for each individual and helping the body heal itself. This is how functional medicine helps heal for the long term.
A short appointment with a functional medicine doctor is 30 minutes! You will feel heard and hardly ever hear, “that’s just autism.” Not all functional medicine doctors work with those with autism, so before making an appointment, ask their office if they work with children or adults with autism. If you’d like to learn more about functional medicine and autism and get a list of vetted doctors who work with those with autism, please see my book The Lyons Report 2020: Autism & Functional Medicine Doctors.
The health of our children is important, too important to have someone tell us “that’s just autism” when our gut intuition is telling us something is not right. Trust your intuition. You are right. Your child deserves to be healthy and live a long and full life.
This article was featured in Issue 103 – Supporting Emotional Needs