“The first step is to take some deep breaths and make sure that you have what you need emotionally,” says Zoe Gross, director of advocacy for the Autistic Self Advocacy Network (ASAN). “It’s very difficult for many parents when they’re getting an autism diagnosis,” Gross says. Stigma and fear are strong forces that influence how our culture views and talks about autism. But educating yourself about autism can help you understand your child better, combat stigma, and “learn the reality of this disability,” which, for autistic people, “is just the way we live our lives,” Gross says. “It’s not scary to us.” The types of therapies, interventions, and accommodations your child will need depends on their individual situation. When your child’s autism is diagnosed, “some places will be very prescriptive, and they will be like, ‘Your kid is autistic and they need this because all autistic kids need this,’” Gross says. However, it’s important to focus on addressing your child’s specific needs and struggles, “because what everyone needs is so different.” “If your child doesn’t have a reliable way to communicate, that’s the first priority,” Gross says. Helping your child find a way to express their wants and needs is critical. For some autistic kids, this means speech therapy. Others use text-to-speech devices or tools that enable people to communicate without talking. Physical therapy, occupational therapy, and psychotherapy are all options that might help your child gain new skills. If your child is struggling with their handwriting or learning how to tie their shoes, for example, occupational therapy might help. If they could use help walking and moving in a more coordinated way, physical therapy might be a good option. If they’re feeling anxious, overwhelmed, or depressed — or if they have a difficult time figuring out how they feel and how to respond to their feelings — talk therapy may be necessary. Access all the types of therapies that your child could benefit from; just one might not meet all their needs. Respite services are another resource. “Caregivers of autistic people can have someone come over who will do the caregiving for them for an afternoon or for a weekend so that they can have a break,” Gross says. If you need some time to yourself — or with friends, family, or your own therapist — as you process your feelings about your child’s autism, respite services could help.
Accessing Autism Services
If your autistic child is attending public school and receiving so-called special education, they legally must be given an Individual Education Plan (IEP), which includes the child’s educational goals and a roadmap for reaching them. This plan, which is put together by the school, “must be designed for one student and must be a truly individualized document,” according to the U.S. Department of Education. Teachers, parents, school administrators, other professionals such as counselors, and sometimes the students themselves can have input on those plans. Depending on your child’s needs, the school may provide therapies, one-to-one aides in class, alternative and augmentative communication devices, and more. If your child is too young to attend public school, they might be eligible for early intervention services, according to the Centers for Disease Control and Prevention. Aside from figuring out what therapies and services your child needs, it’s also important to ensure your child isn’t receiving services rooted in damaging ideas about autistic people. “If a service is all about having the autistic person appear to be non-autistic, rather than focusing on what they need, that’s a really red flag for us,” Gross says. “We recommend against ABA [applied behavioral analysis],” which is “basically the use of rewards and punishments to condition someone to show a certain behavior,” she says. ABA is the most widely used therapy for autism. However, the approach, which originated in the 1960’s, is cloaked in a history of pressuring autistic people to conform to ideas of what “normal” behavior looks like — essentially encouraging autism masking, such as pressuring autistic kids into making eye contact, stop hand flapping, or not talking about their special interests. In a 2018 study of autistic children and adults, researchers found that almost half of people who had undergone ABA therapy in early childhood “met the diagnostic threshold for PTSD.” When you’re communicating with your school district, you can turn down services you don’t want your child to receive. “Parents can definitely say they don’t want their child to get ABA,” Gross says. “They can make sure that the IEP doesn’t have anything about making the kid appear non-autistic, that it doesn’t have anything about reducing stimming, that it doesn’t authorize restraint or seclusion to be used on the child,” she adds. After all, the goal is to help your child be happy, successful, and thriving — not to erase their autism.
Additional Autism Resources for Parents
ASAN’s “Start Here: A guide for parents of autistic kids” covers what autism is and what services are available (and how to gauge the quality of those services). It also shares information about U.S. laws that protect your child’s rights. One such law is the Americans with Disabilities Act, which “prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.” Another is the Individuals with Disabilities Education Act, which “requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.”Thinking Person’s Guide to Autism, an organization that pools together resources such as educational content on autism and information about autistic community and advocacy organizations.
