I Think My Child May Have Autism
by Holly Bortfeld
Autism Awareness has come a long way. Now, many more people know at least some basic signs or symptoms of autism. With 1 in every 58 boys now being diagnosed with autism, almost everyone knows someone with a child with autism. The only good news about this is that when a parent sees their child doing something that isn’t in the baby book schedule, they may not wait 2 years before someone tells them that something may be wrong and the parent can go and check it out since they know the “autism” name.
When Something Isn’t Right
As a parent, especially a new parent, you probably don’t know every detail of development, which is why there are developmental specialists. We hear most parents of children with autism tell us that their regular pediatrician shrugged off their concerns as “boys are just slower than girls”, or “let’s just wait a year and see if he comes around”. Do not accept these comments as answers to your concerns, because if there is something wrong, the time you lose you can never get back and early intervention is essential.
What is What?
How do you know if your child’s development is really delayed or if their development is typical? Start by putting it in writing:
- To help you assess your child’s development, print out the Developmental Milestones appropriate for your child’s age range. Next to each milestone, mark when, or if, your child actually met that milestone. Take this paper to your physician to show that it’s not just a “feeling” but you can SHOW how delayed, if any, your child is and in what areas.
- Print out the diagnostic criteria for autism and check off the things your child does.
- Print out the Autism Treatment Evaluation Checklist (ATEC) and complete it.
- Print out and complete the MCHAT
So, you’ve done all the above paperwork and you think your child may have autism. What do you do next?
Finding a Diagnostician
Getting a good diagnostician is very important. Not all evaluators are good, and a bad diagnostician can cost your child years of lost services so getting it right the first time is important. Getting a parent recommendation is the most valuable tool in finding someone to evaluate your child.
How to find a pediatric developmental specialist to diagnose your child:
- Your local TACA chapter or our TACA-USA national Yahoo! group for a parent recommendation.
- TACA’s provider database.
- Your insurance company’s list of providers (call the number on the back of your insurance card or check the insurance company’s website).
- Early Intervention system in your state.
- Regional Center (in California).
- Google search for “developmental pediatrician and your city & state”.
- Medicaid or other state health insurance like Healthy Kids (call the number on the back of your insurance card)
- Referral from your regular pediatrician
Won’t Someone Just Tell Me If There is a Problem?
The chances of a medical professional seeking your child out is not high and if your child does have autism, you do not want to wait until your child is in school at age 5 or 6 to get help.
Do not wait for professionals to help guide you. Parents need to drive the proper assessment of their child. Once assessments are completed, early intervention is key. If your child is under the age of 3, contact Early Intervention in your area ASAP. "Wait and see" is never a good choice for children with developmental delays.
Can’t I Just Let the School Diagnose My Child?
No. You want a recommended medical diagnosis independent of the school that isn’t based on educational criteria or available school programs. Whether or not you give the medical diagnosis to the school is purely your choice.
***Please note: autism can only be diagnosed by qualified medical professional or licensed psychologist. School district “school psychologists” are very rarely licensed psychologists, thus they are not qualified to diagnosis autism. District evaluations are intended to determine the likelihood that a child has an autism spectrum disorder and/or the child’s IEP eligibility category. There is no such thing as an “educational diagnosis” of autism. The IEP team should rely on reports medical doctors and/or licensed psychologists to confirm a child’s autism diagnosis.
How Young is Too Young?
It’s very rare for a child under the age of 18 months to get a diagnosis of autism since they wouldn’t have missed many developmental milestones yet or be that delayed since they are still too young.
What’s the Difference Between Getting a Diagnosis of “Autism” versus “PDD-NOS”?
Services. Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) or Aspergers will disqualify your child in many states from getting services or support. If your child has an autism spectrum disorder, push the doctor to diagnose your child with Autism.
For the past 10 years, TACA has witnessed many children receive these two diagnosis and then not receive any help for their affected child. Most of these children truly met the criteria of autism. A proper diagnosis as the first step for families to receive help and have better outcomes for their children.
What to Do While You are Waiting for Your Appointment
Many recommended specialists have wait lists. Sometimes the waiting can be many months long. Even after making an appointment, call every week to see if there is an earlier appointment with other diagnosticians and take an earlier appointment if possible. Remember to ask to be put on a cancellation list so you can get in sooner if there is a cancellation. It is better to keep looking for other diagnosticians that you can get into sooner, rather than waiting 6 months since time is crucial at this stage for a child. Call all of the developmental pediatricians in an area as far as you can travel to get in sooner if need be. If you do need to wait, make sure you get a copy of your child’s developmental file and scan it to your computer so you can print out whatever you need for the various specialists you may need to see. Specialists appreciate prepared and motivated parents. Often specialists will help the motivated and prepared families who follow up, call and send in paperwork well before their scheduled appointment.
What Does an Evaluation Appointment Look Like?
An evaluation appointment will vary depending on the type of diagnostician you choose.
When performed by a multidisciplinary team, your child will be evaluated by a psychologist or psychiatrist, and therapists such as speech, occupational/sensory and physical therapy who will each run a battery of tests on your child. This type of evaluation is generally done at a children’s hospital or specialty autism center. This appointment may take a few hours or may be done in several appointments.
A developmental pediatrician will generally ask the parent many questions about the child’s development and current behavior. This type of doctor is generally the best for evaluations because they are specially trained for evaluating delays in children. It is important to accurately answer the questions about your child and portray the issues. Do not be embarrassed to accurately describe concerns and issues. It is important to not “sugar coat” and down play any delays. Minimizing or downplaying answers will not help your child in the long run.
Evaluations should include the doctor asking many questions about your pregnancy, the birth and development of your child as well as family background. The doctor should also get down on the floor and interact with your child to conduct a complete evaluation.
What to bring with you – a copy of:
- Your child’s developmental file from your regular pediatrician
- Any baby book with other information and developmental milestones noted
- Your list of developmental milestones and diagnostic criteria marked with your child’s information
- Your ATEC scoring sheet
- Your insurance information
Note: Always remember to give specialists a copy of your paperwork. Keep the original paperwork in your files.
You will almost always know the diagnosis determined by the doctor before leaving an appointment but it can take 1-4 weeks before they mail you a written report.
Make sure to ask the doctor for both the full report and a short (one paragraph) letter that simply states your child’s name and diagnosis as you will need to show proof of diagnosis at many places (like Disney World) but you don’t want to provide an entire developmental report. Asking for that now eliminates the extra charge that may be assessed if you decide you need it later. The short letter can also help expedite the next steps for early intervention.
Does Insurance Cover Evaluations?
Almost always, but you must make sure your visit is NOT coded for autism (ICD9 code 299.00) but rather what it was, a developmental evaluation. Many insurance companies will deny payment, even if pre-authorization was given, once autism is written on the paper.
What Do I Do if the Doctor Diagnoses My Child with Autism?
If your child is diagnosed with autism, do not wait. This is where TACA will guide you. Come back to the TACA website and start here:
- TACA’s Newly Diagnosed Child Guide
- Connect with your local TACA chapter
- Join the TACA-USA Yahoo! Group
- Apply for a free 1:1 TACA Mentor Parent to guide you.
- If under age 3, contact your local Early Intervention office
- If over age 3, contact your local school district’s special education office - either call your local elementary school and ask them for the contact information for the district special education office or Google search for your city and state and “special education”.
- Read our Autism Journey Blueprints so you can SEE you’re your path for the next 3 years will look like.
- Go to a TACA meeting and get your FREE Autism Journey Guide. (If there is not a meeting close by, get one for free and just pay for shipping from our web store).
- Don’t give up hope. Read these family stories of hope and recovery.
TACA has witnessed many children greatly improve with early intervention services and medical treatments unique to each child’s needs. With the proper assessment, early intervention and treatments there is great hope for children affected by autism. The earlier children receive the diagnosis, start early intervention services and receive medical treatments the better the outcome. Contact TACA if you have any questions or need additional assistance.