For Those New to the Diagnosis of Autism:

The First Things to Do and the Initial Visit to the Neurologist

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UPDATED: June 3, 2003


If you are reading this page, then you have probably just gotten the diagnosis of autism, PDD, or Asperger's Syndrome. This first year after the diagnosis can he so hard. There are so many changes ahead. Quiet days become filled with hectic schedules; TV time with Elmo is replaced by evaluation after evaluation as you struggle to learn what your child's strengths and deficits are; phone calls with friends turn into phone calls for funding searches. The first year can be so difficult, frustrating, and tiresome. There are so many changes that can turn your life upside down (but keep the faith...life will feel normal again).

My son received his diagnosis of autism in January of 2002. I now have the first year after the dx behind me. We have now settled into a routine of therapy appointments and at-home therapy programs I run by myself. The evaluations are now gone, a thing of the past, as my son and I have now begun to move forward after many months of spinning our wheels trying to find some normalcy after the diagnosis.

But this is the good news: There IS normalcy after the diagnosis. It takes time. It takes patience. It takes faith. But you will settle into a routine. One day at a time, you will find normalcy again.

I think the hardest part is the constant fight. You are your child's best advocate. At times, it might seem you are your child's ONLY advocate. Doors might close on you when you least expect it. You may see professionals you have long-trusted begin to play politics, especially if you disagree with their diagnosis. Finding funding for therapies can be a nightmare (but there IS funding out there; the purpose of TASK is to help you find funding and the resources you need).

Last year was a very long, hard year for me. Along the way, I have learned some things, and I wish to share them with anyone who cares to listen. I sincerely hope that this page helps someone. I sincerely hope that this page helps you.




OK, YOU'VE GOT THE DX, NOW WHAT??

1. If your child is under the age of 3 years old, immediately ask your pediatrician or professional who diagnosed your child for a referral into the EARLY INTERVENTION SYSTEM (called TEIS, Tennessee's Early Intervention System, for those of you in Tennessee). Early Intervention offers FREE evaluations and therapies until your child turns three years old. They offer Speech Therapy, Occupational Therapy, Physical Therapy, a teacher to work one-on-one with your child, small group playtime for your child, and ABA therapy (Applied Behavioral Analysis, or behavioral modification). These services are FREE and much of it can be done IN YOUR OWN HOME or at your child's daycare.



2. Ask your pediatrician for a referral to a pediatric neurologist . It may take a while to get in to see a good neurologist. My wait was two months, which isn't all that long when compared to some other waiting lists. So act on this quickly. (see below for information on what to expect during the visit)



3. Get your child into therapy: Speech Therapy, Occupational Therapy, Sensory Integration Therapy (usually provided by OTs and PTs who are trained in Sensory Integration), Applied Behavioral Anaylsis Therapy (ABA), Physical Therapy (if needed), and preschool/daycare/playgroup.



4. Schedule a hearing evaluation to rule out hearing loss as the cause of a speech delay. If your child is under the age of 3, the Early Intervention System will pay for this evaluation. My son had his eval at the Tennessee School for the Deaf in Jackson, TN. Ask your pediatrician or Early Intervention Coordinator about scheduling an evaluation.


5. Start searching for funding . Unfortunately, autism often is not diagnosed until the child is two years old, which gives him/her only a year or less of funding from the Early Intervntion System. That year will pass quickly, and you don't want to wait until your child turns age 3 to have alternative funding in place.


6. Be very careful about using the diangosis of autism with your insurance company. Insurance has been known to refuse to pay for crucial treatments such as speech therapy when they realize that the treatment will be on-going and not short-term. Many parents end up using the diagnosis of developmental delay with their insurance companies.


8. Begin your long search for answers. YOU ARE YOUR CHILD'S BEST ADVOCATE. Remember this. Many times, it will be up to YOU to learn of the latest news, resources, and therapies. Many times you will have to advise, even inform, your therapists and doctors about problems and therapies associated with autism. This can be a tough battle, as often the professionals become locked into the knowledge they already have about autism; I have learned that many often immediately reject alternative therapies such as diet, nutrition, supplementation, and sensory integration.


9. Remember the politics. Politics can come into play in any situation and in any relationship regarding your child's diagnosis, funding, therapy, and education. Always be aware that you WANT PEOPLE ON YOUR SIDE and willing to help you when you need referrals, recommendations, and paper pushing. It's nothing personal...it's ensuring that your child has as many options for the future as possible.



10. This might be the most important one of all: TAKE CARE OF YOURSELF AND YOUR HEALTH. It is all to easy to become emotionally, physically, and financially drained from all the worrying, crying, researching, and running to appointments and evaluations. You cannot help your child if you become so worn thin that you lapse into depression or become hospitalized for exhaustion. Trust me here; I did not pay attention to my health that first year after diagnosis, and now I constantly battle high blood pressure, and, at age 32, I am now taking life-long medicines for my blood pressure. Take care of yourself. Relax from time to time. Take vitamins. Eat. Sleep. LAUGH AND LIVE. If you see your emotional or physical well-being diminishing, please visit your doctor. S/he can help you.



11. Get a 3-ring notebook and some dividers to keep track of all your evaluations, receipts, bills, and correspondence with Social Security, TennCare, etc. Keeping everything organized and together will help you later when you visit a new doctor/therapist or search for funding.




WHAT TO EXPECT AT THE NEUROLOGIST VISIT:

You can expect for the evaluation with the neurologist to last about an hour. The neuroped will observe your child, interact with your child, and will ask you many questions about developmental stages. Be sure and WRITE THE STAGES OF YOUR CHILD'S DEVELOPMENT DOWN AHEAD OF TIME so you will be prepared for these questions.

Here are some ideas to note about development:
When did your child first:
*smile
*laugh
*coo
*say first word
*sit
*crawl
*stand
*walk

Here are some more questions the neurologist might ask:
*When did you first have concerns about your child's development and why?
*When was your child diagnosed and by whom?
*Does your child make good eye contact?
*Does your child often appear to have hearing problems? (e.g., does s/he respond when you call his/her name?)
*How does your child communicate his/her needs? (e.g., verbally; pointing; taking you by the hand and leading you to desired object; simply crying?)
*How does your child act around other people? (e.g., does s/he smile when someone enters the room? does s/he cling to the parent? is your child aware that someone has entered the room? or does the child go off to his/her bedroom and avoid contact?)
*Does your child fixate on spinning objects or on lining things up?
*Does your child spin; flap his/her hands; rock him/herself?
*What is your family history with autism, depression, or other neurological conditions?
*Were there any problems with the pregnancy or delivery?


The neurologist might also:
*talk with you about medications for your child
*order testing such as blood tests and an EEG (if seizures are suspected)
*request a follow-up visit after testing is completed

Cost of the Visit: My initial visit with the pediatric neurologist for the evaluation lasted about an hour. Much of the time, the doctor observed my son, and he spent time answering my questions as well. The initial visit cost about $325 before insurance. My insurance DID COVER 70% of this cost, but TEIS did not cover the co-pay. When I asked about it, they said they don't cover neurology visits (I'm just telling you so you can be prepared to pay a co-pay up-front).

If you are on TennCare, it does pay for the remaining balance, but you must check ahead of time to make sure that the doctor accepts your particular plan, and you must take a referral sheet in from your pediatrician (if you forget to take the form in, you might be able to call your pediatrician and have the order faxed in to the neurologist's office).




THE EEG
If your child is young or has sensory issues (e.g., if you are worried that your child will "freak out"), I would suggest scheduling the EEG at a children's hospital. The EEG technicians there will be trained to deal with young children. Our first attempt for the EEG was at the pediatric neurologist's office. My 3 year-old simply did not cooperate, so the technician scheduled another EEG at LeBonheur Children's Hospital in Memphis.

The EEG should last about an hour. It is painless, but can be frightening to a young child with sensory issues. Be sure to take someone along with you, both to help restrain your child while they apply the electrode wires and to lend you support, as this can be very hard on the parent (my son was very frightened and upset; it was difficult for me to hold him down when all I wanted to do was pick him up and soothe him).

Basically, an EEG reads the child's brainwaves to detect seizures. This means gluing wires to the child's head. Again, it is not painful, but being in a new place, being forced to lie still, smelling the glue, having things stuck to your child's head, and the sound of the small machine that dries the glue can all cause your child to become very upset. Be prepared for both you and your child to shed a few tears. This process can be difficult, but it is also necessary to rule out seizure disorder.

To help prepare my son for the EEG ahead of time, my OT and I held "mock sessions," where we laid him on a a doctor's bed and dried his hair with the hair-dryer (the EEG tech uses a small hair dryer-type instrument to dry the glue while applying the electrode wires). I also gave my son a sucker to eat while the tech applied the wires. I took crayons and paper to keep him busy. Some places even have VCRs so your child can watch a favorite video. But the most important thing is to constantly tell your child that it's ok, that you are there, that you love him/her. Also, singing softly to your child might help.

The EEG lasted for about an hour. It can take a few days for the glue to wash out of the hair; you may have to use nail polish remover, or simply wash the hair several times over a series of several days. The EEG cost about $200...my insurance covered most of this cost, and the hospital billed me for the remaining balance.


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