Personal story about diagnosis of Autism: a parent's experience


"Suddenly, John sat up in bed, looked me directly in the eye, and said, 'The doctor says Mylanta!' A cold chill ran through me . . . I hugged him tightly, and my heart sank into the pit of my stomach. I was no longer in denial. I knew my son was atypical and needed help."


For each parent of a child with autism there is a point at which he or she (truth be told, it is almost always the Mom who has this "gut feeling" first) realizes that "something is wrong with my child." Denial may precede this revelation for months or even years but then something happens (such as the "Mylanta" moment above) that convinces the parent that "I need to find out what is going on with my child".


This is the point in most movies where the "competent" doctor comes to the rescue. He or she runs tests, does exhaustive research, and then comes in with "the diagnosis." Unfortunately, for most real life parents that is not what happens. What often happens is the doctor examines the child (who just so happens to have his best day in years in the doctor's office) for five minutes and listens to the parent's complaints for another five minutes (if you are lucky) and then condescendingly pooh-poohs all your "unreasonable fears" and offers one or more of the following:


• "Boys talk later than girls."
• "Give it a few months and come back."
• "He seems fine to me."
• "You are reading too many magazines."
• "I didn't talk until I was four."
• "All he needs is a good hug."
• "All he needs is a good swat."
• "You need to stop being so negative."
• "Have you ever heard of Munchausen's Syndrome by Proxy?"


The parent, who should feel relieved at this encouraging news, leaves the office confused and doubting her own sanity. On the way home the child often displays all the symptoms necessary to confirm the diagnosis of autism or Asperger's syndrome, just for fun! What typically follows is the long journey to a diagnosis.


It can take years. Most parents nowadays will research the Internet and make the diagnosis on their own before even going to the doctor (doctors hate this, usually). I am convinced that no child with autism can "hide" for too long. Even if the parent remains in denial and all the physicians who see the child are ignorant of autism, there will come a time when autism becomes so evident that all but the most dense person will have to admit that "something is wrong with this child". Here are some steps to help get a diagnosis if you suspect that "something is wrong with my child":


1. Pray. The Lord knows autism and He will always give you wisdom when you lack it and ask for it. He will lead you to the right people who can help.


2. Contact your local Early Intervention program if they exist in your area. These are set up to assess the developmental needs of children aged birth to three. When you call the program, they will typically send out a professional to interview you, observe your child, complete a developmental assessment on your child, and refer you and your child for additional services or assessments, if necessary. The early intervention program may be the first and last place you need to visit for the diagnosis. However, a physician is usually required for an official diagnosis. Ask parents of children with autism who diagnosed their child. Talk about the symptoms you see and get their opinion. If possible, make an appointment with their child's physician.


3. If you know of no children with autism locally, see if there is a developmental pediatrician in your community. Typically, developmental pediatricians have received additional training on detecting autism.


4. Before you visit the chosen specialist, complete the 12 Questions for Parents questionnaire. The questionnaire asks 12 questions about the child's behavior that correspond to the 12 symptoms of autism from the DSM-IV (the manual physicians use to diagnose autism). Bring the completed questionnaire to the physician and make sure you go over the symptoms with him or her. Do your research before this visit and bring your notes about your child's behavior so you can share this with your child's physician. Don't bring articles on autism for him or her to read - that probably will not happen.


5. Do not allow the physician to dismiss your comments without a full hearing. You are paying for this consultation, get your money's worth. Note: all physicians will not be dismissive of parent's concerns - I am only planning on a worse case scenario.


6. Don't just look at physicians. Some psychologists, therapists, educators, and other professionals can diagnose autism. The important thing is that the professional is familiar with autism and is competent. Speech therapists and occupational therapists may not diagnose autism but if the therapist is familiar with autism, he or she could write up their findings and assist in a referral to a professional who can help. A teacher may also fulfill this role. With additional documentation, the professional will be less likely to dismiss a parent's concerns.


by Gary J. Heffner, creator of The Autism Home Page at MSN Groups.


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A parent's story on receiving a diagnosis of Autism after early sigsn appeared