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 42 boys now diagnosed with autism, almost everyone knows someone with a child with autism. The only good news about this is that when parents see their child doing something that isn’t on the baby book schedule, they may not wait two years until someone tells them that something may be wrong. Instead, since they already know something about autism, the parent can go ahead and check it out.
When something isn’t right
As a parent, especially a new parent, you probably don’t know every detail about child 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 answers to your concerns, because if there is something wrong, you can never get back the time you lost. Early intervention is essential.
Assess for yourself
How do you know if your child’s development is really delayed or if it’s typical? Start by putting it in writing:
- To help you assess your child’s development, print out a list of developmental milestones appropriate for your child’s age. 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,” that you can SHOW how delayed, if at all, your child is and in which areas.
- CDC’s Act Early
- March of Dimes
- Speech and Language Milestones
- 29 Milestones for Speech and Hearing Development
- 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 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. Getting it right the first time is important. 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.
- 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).
- 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 noticing 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 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 age 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 diagnosis independent of the school that isn’t based on educational criteria or available school programs. Whether or not you share the diagnosis with the school is purely your choice.
***Please note: Autism can only be diagnosed by a qualified medical professional or licensed psychologist. School psychologists are very rarely licensed psychologists, thus they are not qualified to diagnose 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 from medical doctors or licensed psychologists to confirm a child’s autism diagnosis.
How young is too young?
It’s very rare for a child under age 18 months to be diagnosed with autism, since they are still too young to have missed many developmental milestones or exhibit delayed since they are still too young.
What’s the difference between getting a diagnosis of autism and "Suspected Autism"?
Services. Services. Without a formal diagnosis, your child will not qualify for help, funding and services. If your child has autism spectrum disorder, push the doctor to diagnose your child with autism.
For the past 15 years, TACA has witnessed many children be denied a formal diagnosis because the doctor didn’t want to “scare” the parents. However, a proper diagnosis is the first step toward appropriate help and better outcomes for the child.
What to do while you are waiting for your appointment
Many recommended specialists have waiting lists, which 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 one 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 six months, since time is crucial at this stage for a child. Call all of the diagnostic specialists 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 therapists. Each will 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. Do not be embarrassed to accurately describe concerns and issues. It is important not to “sugar coat” and downplay 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, and your 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 may need to show proof of diagnosis for community supports or funding, but you don’t need or want to provide an entire developmental report. Asking for that up front 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 (ICD-10 code F84.0), but rather the purpose of the visit, a developmental evaluation. Many insurance companies will deny payment, even if pre-authorization was given, once autism is written on the paper.
What 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 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.
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