Contributed by AANE Staff
In recent years, there has been a significant increase in children receiving an autism diagnosis under the age of 4. Improvements are still needed in the healthcare and education systems to diagnose Autistic children early and accurately, particularly among historically underrepresented groups. But the trend of earlier detection means earlier opportunities for families to learn about autism, better interpret their children’s reactions, and learn effective ways to support them.
When Autistic children are diagnosed very young, parents and caregivers are their best advocates and have to make many decisions about next steps. This can mean trying to make sense of conflicting information and recommendations. Families often worry whether or not they are using the right approaches and services, or doing enough.
Every Autistic child has unique needs. Certain programs and therapies might work for one, but not for another. Three AANE parents whose children were diagnosed before the age of three share five tips for parents and caregivers to consider as they navigate autism and early childhood.
1. Learn about the Early Intervention program.
Many families are unaware of the Early Intervention (EI) program in the United States, which can be an important step for young Autistic children. It is a free service that provides developmental evaluations and services to infants and children under the age of three who have developmental delays.
When the providers at her daycare noticed some differences in Erica’s daughter’s development, they recommended consulting with EI. “It wasn’t at all on our radar,” Erica remembers. “But it’s this amazing place that gives you all the services and then even more services when you get an autism diagnosis. EI is magical.”
Because of her work in the public school system, Janeka knew about EI before her daughter started to show developmental delays. She suggests families access the service as soon as they have worries about their child’s progress. “Many times, you’ve waited six months or eight months to see a developmental pediatrician or a neuropsychologist who tells you your child should be in Early Intervention. And then now you have four months until they’re three and all of that critical time is gone,” Janeka explains.
Even without a diagnosis, caregivers who have concerns about their child’s development can request a free evaluation from the EI clinicians. If the child tests below the threshold of expected development, they will provide free therapy and services to address it. Learn more information about Early Intervention here.
2. Never forget you have control.
Parents and caregivers should always feel they can make decisions in the best interest of their child. Linda’s* Autistic daughter was receiving EI services even before she was diagnosed at age two and a half. When she turned three, she was switched to a different agency and clinician. The speech therapy her daughter had been receiving taught communication skills and flexibility through play, but that approach vanished. The new speech therapist focused on repeating tasks. “I immediately felt uneasy with the new direction,” Linda recalled. “It seemed to be the exact opposite from what she was doing before. My daughter went from loving all of the people she worked with to running away.”
Linda consulted with her diagnosing neuropsychologist for advice who told her that if it wasn’t the right fit, she should make a change. Linda voiced her concerns to the agency and they changed the clinician and the approach. “It was truly empowering to know that I didn’t have to follow along with what I knew wasn’t working,” Linda said.
Erica and Janeka both recognized the generalized recommendations they received for the number of hours of therapy each week wasn’t going to work for their daughters. “She was exhausted,” Erica said. “They were full school days, and she’d come home and take a nap. I saw my child was tired. I wanted her to have unstructured time after this very structured day. I wanted her to be a kid and have fun.”
“They’re going to say you need 30 hours of therapy, you need this, you need that, and for what?” Janeka said, recalling advice she had been given. “She’s always going to be Autistic, and that’s going to manifest in different ways. They are kids. They do need therapy, but there needs to be a balance. Keep that in mind — that you do what’s best for them, and it’s not always in alignment with the recommendations you’re going to get.”
3. Tap into your child’s interests.
Finding ways to engage with a young Autistic child’s interests can be an effective way to aid in their development. When it was clear Janeka’s daughter began reacting negatively to therapy, she switched to an adaptive gymnastic program. She loves it, and it also has therapeutic value. “She has been in that class forever, and it’s fun, and she looks forward to it,” Janeka said. “And guess what? She’s still working on her core and it’s still heavy work and she’s still getting that, but it’s fun.”
Exploring a young child’s interest can also become a way of connection and encouraging communication skills. When Linda’s daughter was four, she was fascinated by the map of their local subway system. She asked if they could visit every stop on their branch. Over the course of several months, the family went on outings on the weekend to see the stops, many of which they had never visited. “In some cases, we spent the whole afternoon just walking around so she could get a mental picture of what the dot on the map represented. We’d have long conversations about it, and it was super fun. It was something we never would’ve done otherwise,” Linda said.
4. Let go of societal expectations, and allow your child to be who they are.
From ingrained traditions to social media pressure, it’s hard to avoid forming a list of mental “shoulds” and “shouldn’ts” for a child, but it is important to step back and really evaluate the impact. Attending big parties, posing for first-day-of-school pictures, wearing a Halloween costume – whatever it is: if it is going to cause the Autistic child distress, it is worth considering whether or not it is truly important or necessary.
For Erica, sometimes that means taking a break from social media. “You know, it’s really hard to let go when you see everyone else around you performing these social norms,” Erica admitted. “But if you just remove that noise, it’s much easier to let it go.”
Linda recalls how liberating it was when she realized they didn’t have to conduct her daughter’s birthday in the traditional way. “My daughter would cry whenever anyone would sing ‘Happy Birthday,’ and we finally said, ‘Why are we doing this?’ She also didn’t like cake, so for her birthday, we made her favorite chocolate chip cookies and we told everyone we weren’t going to sing. Nobody cared, and everyone was happy. It was fantastic!”
5. Find a community.
Whether it is an online support group or forum, through school, or some other way, many parents and caregivers feel connecting with other parents of Autistic children is essential. They not only have a community where others understand, but it becomes a tremendous channel to learn about providers and other resources.
”It’s awesome,” Erica said, reflecting on the support groups and Google group forum she has been a part of through AANE. “Just being validated and getting advice from other parents in the AANE community, I think it’s part of the reason why our journey has been… not stress free and not easy, but it’s been doable. I think it’s because I’ve had access to the AANE community.”
“Especially in the beginning when they’re little, I feel like community is so important,” said Janeka. “Some of my best friends that I turn to for stuff I’ve met in support groups. That’s been huge. Really huge.”
Listening to other Neurodivergent parents in the AANE community helped to give Linda the confidence to get evaluated herself, which confirmed she was Neurodivergent too. “It was lovely to be able to show both my kids through my own process that my brain also works differently, and having that knowledge really helps us understand ourselves and each other better.”
*Name changed at parent’s request.
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