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This mom suspects toddler has autism, but doc is telling her to wait

Our son is 2 years and 8 months. We suspect he has autism and recently asked his doctor for a referral to a specialist for an evaluation. The doctor said we had to wait until he is 3 years old. Unfortunately, the situation is getting worse. He doesn't sleep, is scared of unusual things and is not eating well. But he’s nonverbal, so he can’t tell me what’s going on. What can we do to help him?

Today’s “Got Questions?” response is by child psychologist Sally Rogers, of the University of California Davis Medical Center and the UC-Davis MIND Institute, in Sacramento, California. Dr. Rogers has received several Autism Speaks grants for her work on early intervention. She is the co-developer of the Early Start Denver Model autism intervention program and the co-author of the parent’s guide An Early Start for your Child with Autism.

Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

Thank you so much for writing.

It’s unfortunate that your child’s doctor is under the impression that autism can’t be diagnosed until age 3. Research clearly shows that, for many children, diagnosis is possible as young as 18 months. Even younger children can benefit from early intervention for symptoms of developmental delay that can be red flags for autism.

Also see “How early can autism be diagnosed?”

The good news is that there’s more than one route to get help. If you have concerns about your child’s development, you don’t need a doctor’s referral to request an assessment and therapy services through your state’s federally mandated Early Intervention Program.

Learn more about accessing your state’s Early Intervention services here.

Federally mandated Early Intervention programs serve children, birth to age three, who have developmental difficulties. And they are free of charge. By law, these programs must complete developmental assessments within a specified period after you request them. For children 3 and older, your public school system must provide similarly mandated services through an Individualized Education Program (IEP) for your child.

Neither of these programs require a physician referral. A parent’s concerns are sufficient to warrant an evaluation.  

Services provided through Early Intervention and IEP programs can include behavioral therapy, occupational therapy and speech therapy – any and all of which can help address developmental challenges that include symptoms of autism.

Your child does not need to have a formal diagnosis of autism to receive these services. Nonetheless, I encourage you to pursue a formal evaluation for autism to guide whatever services your son receives.

If you want to seek additional evaluation or therapy through the medical system, I encourage you to seek a second opinion from a developmental and behavioral pediatrician, a child psychologist or a child psychiatrist.

You might also consider completing the toddler-screening checklist known as the Modified Checklist for Toddlers (M-CHAT). The Autism Speaks website has an interactive, auto-scoring version that has been approved the M-CHAT’s developers. You can access it here and print out the results to share with your physician and/or one of the specialists described above.

Meanwhile, you can make the most of your child’s playtime and other everyday activities to help your child engage, communicate and learn. Zero to Three, a project of the National Center for Infants, Toddlers and Families, is a free online guide for using playtime to improve your child’s skills while you wait for a diagnosis.

Strategies for play-based engagement is also at the heart of An Early Start for Your Child with Autism, which I co-authored with Geraldine Dawson and Laurie Vismara. For instance we offer a six-point checklist on what you can do to increase your child’s attention to people:

1. Identify what is in the spotlight of your child’s attention. i.e. What are his favorite activities?

2. Step onto the “stage” of his attention. Make sure your child has a clear view of your face as you share in the activities he enjoys.

3. Eliminate competition. If something in the environment is distracting your child, find a way to eliminate it from competing with you for his attention during your shared activity. You may have to move something, turn something off, close a door, turn your child around or go to another room with your child to protect his attention from distractors.

4. Identify your child’s social comfort zone. Learn how physically close is comfortable for him.

5. Join in by following your child’s lead. Instead of trying to direct your child’s attention, follow your child’s focus.

I hope that these ideas will open up some additional doors for you and your son.

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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.