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Autism spectrum disorder (ASD) affects 1 in 59 U.S. children [1] and their families. Let that sink in for a moment...
Concerns about their child’s development, and very often, concerns about Autism specifically, make up a large portion of the questions brought to me by parents. If you have concerns about your child’s physical, emotional, or social development, bring it to the attention of your pediatrician right away. You do not need wait until your next well child appointment.
In our office, we provided a standard ASD screening called the M-CHAT at ages 18 and 24 months. This tool allows for early identification of children who have behavioral or developmental concerns that may be consistent with ASD. While it is most common to show some recognizable signs of ASD by this timeframe, some children will not display them until later on.
In the U.S, the average age of diagnosis is age 3.
This is a problem...why? Research has shown that the earlier ASD is identified and the child and family are connected to the appropriate services, the more progress they can make [2].
So, we know that early identification is key… but just what are we looking for?
Any signs that your child isn't meeting developmental milestones, particularly language development or making eye contact, should be discussed with your pediatrician.
Also, take notice if your child WAS previously hitting some milestones but does not seem to do those things anymore.
Self stimulatory behaviors like rocking back and forth or hand flapping can be related in some cases.
They may have difficulty with social interactions.
Children with autism often seem to be overly sensitive to loud noises and have aversions to certain tastes and textures.
They also tend to like things a certain way. For instance, they may get upset if their toys aren't lined up in a particular manner.
Also, you may notice that they have a different take on how to play with toys - instead of rolling a car like a car, they look at the tires up close and spin them.
Autismspeaks.org has an online M-CHAT checklist you can use to assess your child here. Let this be a jumping off point for your discussion with your pediatrician.
It is important to remember that so-called "typically developing" children will also display one or more of these behaviors at some point in early childhood so your pediatrician will look at the full picture during your assessment.
So... you have spoken to your pediatrician and she agrees you should seek a specialty evaluation to confirm the diagnosis, but it's a several month wait. What do you do in the meantime?
If your child is less than 3, you can call Early Intervention (I told you I love these folks!) and have an evaluation to see what therapies would be beneficial. This may include speech, occupational, physical and/or behavioral therapy. You could also schedule an appointment with a psychologist or therapist in the interim for support.
If your child is older than 3, you can ask for referrals to local outpatient therapies. If your child is school-aged, you can ask for school-based therapy if it is available. Some children will be referred for something call "wraparound" which provides comprehensive services in the home, school and community. This may include a Therapeutic Staff Support (TSS) member that will work with your child 1 on 1.
Each school has a different policy for how they provide services to children with a diagnosis like ASD that may learn in a different way or need in-class support. They should provide you with something called an IEP (Individualize Education Plan) that is designed specifically for your individual child's educational needs in school and at home. It is then reviewed at least annually by a multi-disciplinary team at the school.
Here are some other really great resources for caregivers of children with ASD:
Provides training for patients, parents and healthcare professionals. There are scholarships available for the courses that have a cost, and some classes are available in Spanish and Vietnamese.
Wrights Law Special Education Law and Advocacy
An advocacy group that can help you navigate disability laws
"Supporting the Parent Centers Who Serve Families of Children with Disabilities"
References
[2] Autism: AAP guidance includes updates, searchable topics, executive summary
Susan L. Hyman, M.D., FAAP and Susan E. Levy, M.D., FAAP
December 16, 2019. https://www.aappublications.org/news/2019/12/16/autism121619