So, you think your young child might be on the autism spectrum. Maybe they’re not talking or communicating as expected, or they don’t seem to understand when you talk to them. Perhaps they seem exceptionally frustrated and their tantrum behaviors don’t seem developmentally typical to you.
Like many other parents, I have been there. My son was about eighteen months old when I first suspected he was not neurotypical. He was just under three when we finally got an official diagnosis.
I know the anxiety that comes with suspecting your child might be autistic. You love them so much. You want them to be happy and successful, but you have very little experience with autism. It’s so hard because you want to support your child and help them be their happiest self, but you have so much to learn. Resources exist to help your kid make progress, but you don’t have the slightest idea where to start.
Well, take a deep breath. We can help.
Dr. Colleen Kraft is a working pediatrician, professor of pediatrics, former president of the AAP, and Senior Medical Director of Clinical Adoption at Cognoa, a pediatric digital behavioral health organization focused on early intervention.
Dr. Kraft agreed to sit down with Scary Mommy to empower parents with the knowledge to take the appropriate first steps when they begin to suspect their child is autistic. Here’s what she had to say.
You absolutely can begin to notice autistic traits in your child quite early on.
Trust yourself. Dr. Kraft says that parents might notice some autistic traits in their child as early as fourteen to eighteen months. “It’s [often] in the area of receptive language,” she explains. “They’re not quite getting what [the parents] are saying to them. They’re not bringing things for them to look at, not pointing at things.”
She also notes that children who are unable to express their needs might have increasing tantrum behavior around this age, and while that can be typical toddler behavior, it can also be an early sign that your child is on the spectrum.
Even if your pediatrician suggests a “wait and see” approach, you can take control of your child’s care on your own through Early Intervention.
“We need to work with our professionals on how to actually connect families to services earlier and start to manage the [diagnosing] process,” Dr. Kraft explains. “Besides going to your pediatrician, the next call you should make is to your early intervention program.”
According to Dr. Kraft, every county in every state has an early intervention program for children under three years old, and you don’t have to wait for your medical professional to refer you. Parents are free to call about their own child to request the appropriate evaluations, and ultimately set up an individual family services plan, or an IFSP. This will help you help your child while you journey through their preschool years.
Look for a Help Me Grow program in your area.
“Many places in the United States also, and many children’s hospitals have programs called Help Me Grow. Help Me Grow is a program that looks at the whole spectrum of development including behavior,” says Dr. Kraft. “They can often be a very great resource for you, and you do not need a referral for you to call them.”
Help Me Grow programs are not available in all fifty states, but families with access to their services should seek them out.
If your child is too old for Early Intervention, you can still get the ball rolling on your own.
“If a child is over three years of age, they are part of the school system,” explains Dr. Kraft. “Prior to the 1970s, when you had a child with autism or even a child with a severe medical condition, they didn’t go to school.”
Thankfully, child advocates saw the injustice in that fact, and thus Public Law 91442 was born, and eventually morphed into the Individuals with Disabilities Education Act, or IDEA.
“Now all children from ages three to twenty-one are entitled to a free and appropriate education,” says Dr. Kraft.
Because your child is entitled to that education, you have rights. If you feel strongly that your child is on the spectrum and needs special education services, this next part is incredibly important:
“Write a letter requesting a child study,” urges Dr. Kraft. “You need to say child study, and you need to sign it and date it. ‘Child study’ is the legal language that tells the school, ‘You have two weeks to respond to me, and you have sixty days to get an evaluation on the books.’”
Find a community that understands your child’s strengths and challenges.
Dr. Kraft suggests finding an advocacy group in your area that works with autistic kids. Another resource you can seek out on your own is a parent of a child with autism.
“Don’t be afraid to ask your pediatrician or anybody working in early intervention, ‘Who is a parent I could talk to?’” encourages Dr. Kraft. “It feels like everyone has to reinvent the wheel for their child, and that shouldn’t happen.”
Other parents can help you find the best therapists in your area, encourage you, and give you some tips on navigating the process and advocating for your kid.
Remember that the diagnosis is not a label — it’s a next step.
“Now that you have the diagnosis, think about this as a next step. The ability to open the world to your child. Your child’s brain is wired a little bit differently. What therapy will do is help that wiring improve communication skills and decrease some of the sensitivities that really bother them and hurt them. We know that if a child gets into therapy early, about twenty-five percent of them will not meet criteria for autism by kindergarten. Seventy-five percent of them will be able to be mainstreamed in school.”
If you child is beginning to exhibit some autism traits and you’re not sure where to turn, the information above can help. Always bring any developmental concerns to your child’s pediatrician first, but know that you are ultimately in control of your child’s path. You don’t have to wait for a referral to get your child the help they need.
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