Path to Diagnosis
Parents of children with a diagnosis of an Autism Spectrum Disorder (ASD) often have inches-thick files for their children. Visits to pediatricians, psychiatrists, psychologists, developmental-behavioral pediatricians, behavioral therapists, occupational therapists (OT), speech therapists (SLP), physical therapists (PT), and other professionals all make up thick medical files. Evaluations and IEP or 504 plans from school are contained in another thick file. Yet another file contains information about possible treatments, therapies, medications, naturopathic and holistic medicine, and all of the (helpful?) articles family and friends send.
Some children are quickly and easily diagnosed with autism. Speech delays, repetitive behaviors/stimming, severe sensory processing dysfunction, and loss of previously exhibited skills are all clues that a young child may need to be evaluated for autism. While there is no blood test or scan to diagnose autism, doctors who are trained in recognizing the signs (such as a developmental-behavioral pediatricians) administer tests, observe children, and ultimately diagnose and refer children with ASD for specific treatments and therapies. Once children enter the school, ideally plans such as an IEP are in place in order to assure they receive the best support possible, including speech and occupational therapy through the school system, and teachers who are trained to work with children with ASD.
For others, the diagnosis may not come until later. A child may speak normally, or even precociously, within the typical age range. He may not have the obvious stimming associated with autism. She may read at a young age and be interested in playing with peers. Once the child is in school, however, differences from typically-developing peers may be noticed.
She doesn’t seem to understand body language, sarcasm, or small talk. She hyperfocuses on certain items or topics and has a difficult time either making or keeping friends because her conversations are more like monologues. His physical and social awkwardness becomes more apparent as he doesn’t play like most of the boys. He becomes agitated over changes in routine and structure and has meltdowns because he cannot control the anxiety. While his academic performance is on par with the rest of the class, his behavior becomes such a problem that parents are called in for behavioral plans or evaluations. This is the time that 504 plans or IEPs are discussed. Some schools are able to offer enough resources, while other families must look for private care to fully meet the child’s needs.
Parents may seek assistance within the school system or privately. There is no specific doctor or expert who can meet all of the needs of a child with ASD. Some school systems are better equipped than others to handle children with special needs, and often the need for private resources is decreased. Or, parents may choose private care providers in order to have more involvement in the child’s care. Some children with ASD need years of OT, PT, and speech therapy, while others simply need a system of support and understanding to help them navigate the journey to becoming an adult living with autism. Ultimately, the parents become the experts and primary advocates for their children, armed with inches of files that summarize the life of a person through medical histories, evaluations, and treatment plans.
About the Author
Tara O’Gorman, MSW, is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an Asperger’s teenager.