Note: We've all heard (and told) story after story of how once our kids were diagnosed, we were on our own. There is no autism GPS. My kindly pediatrician gave me a contact phone number for Early Intervention. There was a DAN! doctor miles from my house successfully treating the medical aspects of autism. I never knew he or his brand of medicine existed until years later. I felt my way blindly hoping to come upon the intervention or treatment that would help. Below is an article that accurately depicts that nothing has changed for families. I see it here in Connecticut. Young Moms wait months and months to get into the Yale Child Study and then..... they call early intervention. Lucky are the few who find a TACA or NAA chapter and get started with help from parents. This is our raison d'etre, long after social media has taken over the soundbite world of communication. Parents are not alone. Not you. Not me. Kim
By Ilene Schwartz
Special to The Times
In June 2019, I was diagnosed with Stage 1 Breast Cancer. I worked with an amazing team of providers and luckily have an excellent prognosis for full recovery. The time from my first suspicious mammogram to an appointment with an interdisciplinary cancer-care team was five weeks. I am grateful for the care that I received and thankful to the staff at University of Washington Medicine and Seattle Cancer Care Alliance for making a difficult situation as easy as it could be.
Of course, I am well aware that the timeliness and quality of my care is due in part to the privilege of being a well-educated, white woman with outstanding medical insurance. It is also due to the privilege of my disease: breast cancer is a disease that people talk about, walk for, and wear and buy pink products to support treatment, awareness and a cure. And for the most part, its treatments are covered by medical insurance.
Throughout this process, I have been thinking about families that I work with who experience a very different journey through diagnosis, accessing treatment and patient navigation. As a board certified behavior analyst, I work with young children with autism spectrum disorders and related disabilities. The pathway that these families travel to get a diagnosis and then to find and pay for necessary educational, medical and therapy services differs from my experience across almost every dimension: My pathway was well defined with multiple road signs along the way; theirs is vague and disjointed, full of unexpected detours and hazards. But it does not need to be this way. The diagnosis, treatment and patient navigation for children with autism spectrum disorder and related disabilities could be improved if institutions worked together and these services were adequately funded.
Once a family suspects that their young child has a developmental delay, their first stop is often their pediatrician. The importance of development during the first five years of life is well documented, yet many parents with developmental concerns about their children are still told to take a wait-and-see approach. From the time parents first share concerns about their child’s development until they get a diagnosis, the average wait time is 1.7 years. For parents of color or who use Medicaid or are uninsured, these waits are even longer.
After the diagnosis, their wait continues. Parents are told that early, intensive intervention is important. The reality is, however, that this evidence-based service is not readily available. Families report long wait lists for services that the professionals tell them are essential to facilitate their child’s development. At the same time, parents are struggling to attempt to make sense of the maze of providers, agencies, recommendations and information. READ MORE HERE.