Before my son was diagnosed with Autism, we went through a lot.
There is a disconnect between societal, medical, and educational systems with regards to children with special needs.
It is my hope that all families and caregivers can get the help and support they need without going through the painful emotional and financial turmoil it cost before and immediately following the initial diagnosis.
For example, there is no "list" or "guide" for what to do when your child has Autism symptoms. We received horrendous treatment by the private school system he was enrolled in at the time, and even more so, it devastated us financially chasing a rabbit (so to speak) because no one could diagnose him.
We went through speech therapy for almost six months, out of pocket because insurance refused to cover it; we had a regular therapist, a pediatrician, an MRI, a EEG, an EKG, allergy testing, etc. He was preliminarily diagnosed with phonological disorder but given no reason why.
Eventually, after developing hallucinations, scary as that was, he was finally diagnosed with Asperger's Syndrome. 2 hospitalizations and 9 weeks of out-patient later, he was enrolled in the special needs services at a public school. Then the real fun began (being sarcastic).
Finally, someone suggested we get a care coordinator! What a joke! She was interested more in the paycheck she received than helping. She made my life so much more complicated, and this was AFTER we had seen numerous doctors and had about 5 diagnosis!
We have come so far with my little boy. But the painful toll it takes on a family, juggling regular life as well as horrendous medical appointments, testing, (even genetic testing), and sitting through meeting after meeting. What the world really needs is a connection between family...medical...school...so we are all on the same page. No guess work. Just a check list standard for all kinds of issues.
My son has seen so many doctors because every one is a specialist in a different area. Some were totally unnecessary but we were told to see them just in case he had something they could "fix".
It's a very painful journey.