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Research, Research, Research!

Most of us parents and caregivers of autistic children are fierce advocates for our children. We relentlessly pursue services and supports based on their needs, we celebrate their successes and capabilities, and we never give up.  But most of us never imagined how much work it takes and how difficult it can be at times.  I certainly didn’t have a clue!

Part of being a fierce advocate involves conducting some seemingly boring tasks.  These tasks are critical to success…and one of the most important of these is research.  

Embrace the power of research!  Be systematic. Knowledge is key not only to understanding and finding the right resources for our kids but becoming an effective advocate.

Although my son Andrew and his younger sister Ainsley weren’t diagnosed with autism and multiple, complex co-occurring conditions until they were 9 and 7 years old, respectively, both my husband and I knew in our guts that something wasn’t right from almost the time they were born.  Andrew’s hands and feet moved in constant circular motion, he never gurgled or talked to himself in his crib, and he lacked any self-control when it came to eating.  And as he started school, we witnessed some regressive behavior:  he could no longer maintain eye contact or handle unplanned changes and transitions in his day-to-day activities.  His almost daily meltdowns were frightening.  Ainsley, too, exhibited worrisome signs and symptoms, ranging from her inability to read social cues and her tendency to blurt out inappropriate comments to some sensory sensitivities and extremely high anxiety.


Yet every time I approached our doctor, he told me to calm down.  “Look”, he said, “The children have learned to read and write with their peers and are social and outgoing.  They’re just a bit sensitive.  This will pass.”  Essentially I was the problem (sound familiar?)!


But I trusted my gut, and I refused to settle.  I dove into research to look for answers, although no one seemed to be able to give me a name for the children’s behaviors.  In addition to searching the Internet, I spent days in libraries and talked with as many professionals, associations, and agencies as possible.  It was overwhelming at times.  But if you don’t persevere, who else will advocate for your child?


As I write in Hold on Tight, when Andrew and Ainsley were finally fully diagnosed, it was such a relief for me.  I didn’t fear the “labels” of autism, Tourette Syndrome, Obsessive Compulsive Disorder, anxiety, ADHD, developmental disabilities, and learning disabilities.   Thankfully there were names to their behaviors, and I could begin to find the right help for them.


So back to research, I went.  I read every article I could about each of the children’s conditions.  I watched videos.  My husband and I joined multiple support groups:  for autism, ADHD, OCD, and Tourette Syndrome.  We bombarded other parents, caregivers, developmental services, and mental health professionals with questions.  


Of course, research can be never-ending.  The law of diminishing returns can kick in, and it’s important to recognize when you have done your best.  You have to take a breather from time to time.


But it’s important to never completely stop.  There are always new findings, medications, therapies, and treatments.  Even today, with grown children, I do my best to stay current and keep educating myself.  It doesn’t require the same breadth and intensity as my initial research unless new critical information comes up.  And there are new challenges to tackle at every stage, whether determining the most effective job accommodations for Andrew or finding a family doctor who can empathize with Ainsley so she doesn’t shut down.


An essential part of my research has always involved looking into each child’s medications.  Most of their meds have been prescribed for their co-occurring conditions, particularly for OCD, anxiety, and ADHD, and have been life-saving for my kids.  But there can be side effects, sometimes serious ones.  Stimulants have caused eating and sleeping problems. They’ve suffered from nausea, dizziness, heart palpitations, headaches, and stomach aches at times.  Recently, we made the decision with Andrew’s psychiatrist to eliminate one of his ADHD medications that none of us believes is benefiting him.  As parents, we have a responsibility to understand our children’s medications, weigh the risks against the benefits, and observe changes in their behavior.

"Image depicting a child happily transitioning between two school buildings, with supportive adults guiding them along the way. The child wears a backpack, symbolizing the move to a new educational environment. The scene exudes warmth and encouragement, embodying the smooth transition process advocated in the blog."


I have also learned that although the Internet is a crucial source of research, it is critical to verify information with expectations and learn what to ignore.  The same goes for social media. The dire stories and warnings that some people spread, as well as the promotion of certain alternative treatments and diets, can be both alluring and scary.  I’m a strong believer in trying anything that may help my children, but a number of “treatments” espoused on the Internet not only make no sense to me but can be harmful, at least to my children.  Certain articles, blogs, and influencers advocate that medications should not be given to autistic children and that they can be “cured” in other ways.  Some believe that the incidence of autism is linked to vaccines, although those so-called studies were debunked years ago.  Others espouse that autism can be cured by ridding the body of toxins.  I’ve heard it all.  But the medical and scientific articles I have read and the professionals with whom I have spoken have consistently disputed any link between these claims and autism.  They even note that a few of these therapies can even lead to dangerous side effects, such as kidney damage.  Autism cannot be cured. 


I empathize with parents and caregivers who are overwhelmed, frightened, and frozen.  I’ve been there.  But please don’t give up.  Keep digging for information.  Remember that knowledge is power: research not only broadens our understanding of the complexities of autism, as well as of our children’s associated conditions, but it allows us parents and caregivers to make more informed decisions about our children’s care.  

Persevere.  Be relentless.  Hold on tight.

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