Child Waits, Diagnosis Inconclusive

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When a child has a disability, there are resources that can provide life changing support - provided the child has an actual diagnosis.

My name is Rochelle.  My son has displayed from an early age behaviors that are considered "red flags" for Autism Spectum Disorder (ASD), or a similar developmental condition.  With a referral from his pediatrician, I took him to the University of Kansas Center for Child Health and Development for a screening.  

The screening revealed symptoms of ADHD and also ASD, which often overlap to the point that diagnosing becomes more difficult.  I was instructed to have my son medicated to control at least some of his hyperactivity, so that the symptoms seen to persist at a follow up evaluation several months later would allow a diagnosis of ASD.  I did this, and saw significant changes in my son's behavior, but not a disappearance of all symptoms. 

On the day of the follow up evaluation, his grandmother, who lives with us and plays a close parental role, had to have surgery due to a cancer scare.  I forgot to bring my son's ADHD medicine to the hospital.  In the stress, worry, and chaos, my son went in for his evaluation unmedicated and in an agitated state.  He ran in circles in the facility for hours.  I explained to the professionals that this behavior was atypical, due to the lack of medicine and the family stress.  I was told that they could only diagnose the behavior that was displayed before them, so he was given a diagnosis of ADHD. 

I asked to have another screening when he was medicated, as they requested.  I was denied.  

Children's Mercy Hospital has declined to evaluate him, stating that KU Med already has. 

These are the only two facilities in the area that offer a diagnosis by a panel, which is what the state of Kansas requires to provide aid.

His social worker, his therapist, his teachers, his behavioral interventionist, and his psychiatrist believe he is autistic.  Despite being presented with letters from these people, both hospitals refuse to screen my son. 

I carry a tremendous amount of guilt, and always will; I feel responsible for failing my son in his time of need.  I don't want him to be deprived of aid because of my mistake. 

Please, all I ask is one fair panel screening for my son, who is the light of my existence. 

He has health insurance.  He needs one more chance.

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