Two Years of Delayed Care, Diagnostic Overshadowing, Disability Barriers, and Dismissal…read more
I first raised concerns in August 2024 because my son was constantly sick. At that time, I knew nothing about autism, Ehlers-Danlos syndrome, mast cell disease, or any of the conditions we would later learn about. I was simply a mother trying to understand why her child was always ill.
My son was originally scheduled to be seen in August 2024. Instead, after nearly two years of repeatedly raising concerns and approximately ten months after being told allergy testing would not be performed and requesting another provider, he was finally appropriately evaluated today on June 15, 2026.
Looking back, I cannot help but wonder how much suffering, illness, and lost time could have been prevented if our concerns had been taken seriously from the beginning.
Throughout this process, I repeatedly encountered dismissal and diagnostic overshadowing.
I am autistic, and after disclosing that, I was documented by this office as being "confused." That notation was deeply upsetting because I have experienced this before. Autism does not mean intellectual disability. Autism does not mean a parent is incapable of understanding their child's medical needs. Being treated as though I was confused rather than listened to created significant barriers to care.
I also raised concerns regarding mast cell disease and cell activation disorders. I was told these conditions did not exist, despite providers publicly listing mast cell disorders among their areas of specialization.
Obtaining even basic things, such as an asthma action plan, became unnecessarily difficult.
I was told, my son who has level 3 autism, that I needed to bring another adult to help physically hold him down during allergy testing. There was no discussion about accommodations, sensory needs, trauma informed care, or alternative approaches for a disabled child.
The message I repeatedly received was not, "How can we help?" It was, "How can you make this easier for us?"
By the end of this experience, I had spent almost two years advocating for care that should have been available in the first place.
Parents should not have to become researchers, case managers, and full time advocates just to obtain appropriate medical care.
Disabled parents deserve to be believed.
Autistic children deserve accommodations.
And families deserve better than spending years fighting to be heard.