Empowering Parents: Tools and Resources for Supporting Your Child With Autism

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There’s a saying that circulates among my friends and colleagues who parent children on the autism spectrum: If you know someone with autism, you know one person with autism. In other words, no two people with an autism spectrum disorder (ASD) diagnosis are alike, even though they may all struggle with communication skills, interpersonal relationships, and understanding the social norms that others take for granted.

Despite the constellation of overlapping symptoms, ASD can look very different from one person to the next. So it’s impossible to write a one-size-fits-all post on resources for parenting a child on the autism spectrum. Likewise, there’s no magic bullet to instantly help those with ASD function effortlessly in a world of neurotypicals.

That said, although ASD wasn’t the diagnosis that started my own family down this path, I know full well that parenting a neurodiverse child can be a lonely and difficult journey. And as a former teacher to many children with ASD diagnoses, plus someone with many close friends parenting a child on the spectrum, I’ve picked up a few tips and tricks along the way.

This is a collaboration post. However, please know I stand behind everything written here, and only include links to products/services/resources I’m willing to recommend personally.

Even though there is no “cure” for being on the spectrum – and thinking of ASD as a “problem” to be “cured” is in and of itself problematic – there are plenty of things parents can do to help their neurodiverse spectrum kiddos coexist and thrive in a world where their unique gifts and perspectives are sorely needed.

But first, it’s worth going over some of the basics of autism spectrum disorders:

What are Autism Spectrum Disorders?

ASD is one of the fastest-growing medical diagnoses on the planet; it’s now estimated that 1 in 36 children has ASD. Although girls are being diagnosed at higher rates than ever before, they still account for only 1/5 of ASD diagnoses. While the exact causes of ASD are unknown, an individual’s genetic makeup can play a role, and other factors such as advanced maternal and/or paternal age are also correlated. Contrary to what some people fear, though, there is no proven link between vaccinations and developing ASD.

Individuals on the autism spectrum also have a high rate of comorbidities (other medical conditions) that tend to coexist with ASD. These include seizure disorders, digestive issues, ADHD, depression, anxiety, and learning disabilities.

The 2013 Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), distinguishes between three levels of ASD. These include

level 1 (those individuals who require support for ASD but are capable of “masking,” or hiding their symptoms, much of the time when in mainstream environments);
level 2 (those individuals who require more intensive support for their ASD symptoms, who have a harder time masking and who struggle to “fit in” when socializing or otherwise interacting with neurotypicals); and
level 3 (those individuals who require the highest level of support, who cannot mask at all, who find self-regulating extremely difficult, and who are frequently unable to initiate social interactions with others).

A word of caution on labels:

Individuals with level 3 autism often need support with basic tasks of daily self-care, even into adulthood; sometimes called “low-functioning,” they are also often among the estimated 4 in 10 ASD individuals who are nonverbal. On the other end of the spectrum, some ASD-1 (level 1) individuals used to be called people with Asperger’s syndrome or “high-functioning” autism.

But the labels “low-functioning” and “high-functioning” are actually offensive and misleading. To say someone is “high functioning” minimizes the amount of energy they need to expend every day just to exist in a neurotypical world, and ignores the very real struggles they face just getting through each day.

While I’ve had students who proudly called themselves “Aspies,” and some individuals see Asperger’s as a diagnosis that they prefer over being labeled as someone on the autism spectrum, the DSM-5 no longer separates out Asperger’s from ASD diagnoses. More recently, many avoid self-identifying as someone with Asperger’s because of the label’s ties to Hans Asperger, a doctor whose research was connected to Nazi eugenics programs.

What resources exist for parents of children with ASD?

This can vary from one community to the next, and one state to the next; but a good place to start is always the person or organization that diagnosed your child. (Diagnosis is usually a multi-step process and could begin with your pediatrician or school district; in some cases, you’ll get a referral to an outside agency specializing in autism diagnosis and support.)

Possible resources you should look into include:

Local organizations specializing in autistic support and therapeutic services

If you have a local counseling agency or autism center that was involved in your child’s diagnosis, start with them. Possible resources they might offer include one-on-one counseling and therapeutic services (more on those below), summer intervention camps designed to help kids on the spectrum with social skills and daily self-care tasks, and support groups for parents and caregivers of children on the autism spectrum.

Your school district

Not all children with ASD qualify for an Individualized Education Plan, or IEP (because IEPs require a specific learning disability that needs specially adapted education to address). But chances are good that your child on the autism spectrum will at least qualify for a 504 plan. (For more on the differences between these two levels of school accommodations, read #3 of this post.) I’ll cover more below on the resources your child on the spectrum may be able to access through your school district.

Your private health insurance and your state’s Medicaid plan

Many states require private insurance to cover autistic support services, such as specialized therapies (see below). Some states include an ASD diagnosis on their list of what will automatically qualify an individual for Medicaid, regardless of the family’s income. Therapeutic services for ASD can be expensive, so it’s important to research what coverages you have available as soon as your child is diagnosed.
If your state allows individuals with ASD to enroll in their Medicaid program, do so ASAP – even if you already have medical insurance for your family. The state program can act as a secondary insurance to cover whatever your private insurance doesn’t cover, and may also cover additional benefits like free school lunches. And some schools and summer programs will NOT provide full access to autistic support services until you enroll your child in Medicaid.

What Interventions Can Benefit Children With ASD Diagnoses?

While there is no cure for autism, many treatments can help individuals on the autism spectrum better navigate the world around them while minimizing the extent to which their autism symptoms impair their daily living. Although not all children with ASD are diagnosed by the time they enter kindergarten, the earlier the diagnosis, the sooner the child can begin treatments designed to help with their specific challenges.

Treatments that can help individuals manage their autism symptoms day-to-day include

Interventional therapies

Applied behavior analysis, or ABA therapy, involves learning ways to decrease less-desirable behaviors (for example, meltdowns) and increase more positive behaviors.
Speech therapy helps individuals who are nonverbal, have limited verbal communication, or developed normal speech for their first few years before losing verbal skills, with improving their ability to communicate.
Occupational therapy can help with daily living and self-care activities, from basic self-care tasks like dressing to more complex tasks like executing a series of steps in order (such as preparing a snack or cooking a meal). Many of these tasks require a higher level of thinking called executive functioning, which is an area where people with ASD (as well as those with ADHD) struggle.
Cognitive behavioral therapy (CBT) can help those on the autism spectrum improve social interactions and manage conditions that often coexist with ASD, such as depression or anxiety, by helping them replace negative thought patterns with more constructive ones.

Structured group therapeutic programs

There are plenty of summer programs for individuals at different levels of ASD, from therapeutic day camps to more intensive residential programs. Often, these programs are targeted toward one part of the spectrum – e.g., those individuals who are less severely impacted, or those whose ASD most severely impacts their day-to-day living. These programs frequently integrate many of the above therapies in a group setting. To find appropriate programs near you, do a web search on “autism summer programs near me.”
Many centers involved in autism diagnosis and support services offer support groups for individuals on the autism spectrum (and often, support groups for caregivers as well). Some of these meet in person; others are virtual. Waitlists can be long for peer groups, so look into this ASAP. These groups take place at different times of the year, not just during the summer.
If your child isn’t up to a full day camp experience, or has other things going on in the summer, a weekly therapeutic activity might be a better fit. Many counseling centers offer summer weekly programs where participants play board games or Dungeons and Dragons; others might offer a weekly theater workshop. All of these activities involve practicing social interactions with peers in a structured, “safe” setting, and can help kids on the autism spectrum improve their skills in these areas.

Neurotherapy

Although less common and less widely available, neurotherapy is another treatment that has proven helpful for individuals with ASD. Neurotherapy is a painless treatment that involves placing sensors on the patient’s head to measure an individual’s brainwaves, and provide feedback to individuals to help them train their brainwaves to perform differently. (Yes, this sounds all woo-woo; but if you’ve ever used the Relax function on a Fitbit, or a similar guided breathing function on another fitness tracker, you’ve done exactly what neurotherapy is designed to accomplish.)
Brain scans of individuals with ASD, ADHD, depression, anxiety, insomnia, and other conditions show noticeable differences from those of individuals without these conditions. In many cases, the neurons in different regions of the brain either aren’t firing in sync with each other, or are over- or under-firing for neurodiverse individuals.
Through activities that help individuals regulate their brain function through positive rewards, over time the brain’s neurons can actually rewire themselves to fire more in sync with each other, thereby improving cognitive function and lessening symptoms. One teen I know watches Owl House, one of their favorite cartoons, during their neurotherapy treatment sessions. The screen dims and the sound goes down when their brain is firing suboptimally, and they can see/hear the cartoon when their brain is firing optimally.

How Do I Advocate For My Spectrum Child’s Needs At School?

Advocating in the classroom

Education is a fundamental right, and children with autism deserve an environment that caters to their learning needs. As a parent, learning to advocate for your child’s needs – and, more importantly, helping them learn to advocate for themselves whenever possible – is crucial. In order to do this, you first have to educate yourself on your child’s rights and the responsibilities of your local school district, according to state and federal law.

Either way, the first place to start is your district’s website, specifically the section on special education. This will tell you the steps you need to take to get your child enrolled for appropriate services and accommodations, as well as what options are available in your home district. Even if you already have paperwork indicating an ASD diagnosis, your district will probably want to conduct its own multidisciplinary evaluation (MDE) to determine which services your child might be eligible for within the district. If you disagree with the findings, you can always seek a second opinion from an outside expert.

Don’t be shy about describing your child’s symptoms and struggles when filling out the parent evaluations that are part of this process. Your child might also want to offer their input. The more graphic and specific you can be about what challenges your child faces when it comes to navigating schoolwork, the more likely they are to get the accommodations they need.

IEPs vs. 504s

Depending on the severity of your child’s symptoms and their coexisting conditions (ADHD, a specific learning disability, etc), your child may qualify for an Individualized Educational Plan. Or they may instead qualify for 504 level accommodations. (For more on the differences between the two, read #3 of this post.)

Some recommended accommodations in the MDE report could include

Specialized instruction in certain subject areas where your child has a coexisting learning disability;
Accommodations on assignments or testing, such as extended time/deadlines, breaking down assignments into smaller steps, or extra one-on-one instruction and check-ins to make sure your child understands the directions;
Alternate arrangements for in-class presentations or class participation through discussion, if your child has verbal challenges or anxiety that make such assignments difficult;
Access to a resource room, sensory room, or a permanent pass to see a school counselor whenever they need to take a break or calm down.

Once you and your district agree on a plan for your child’s education, whether through an IEP or a 504, make sure you stay in regular contact with teachers and support staff. They are your allies, and you should assume they have your child’s best interests at heart. If something isn’t working for your child (e.g., your child would benefit from breaking down larger assignments into smaller pieces with mini-deadlines), it’s worth approaching them with a collaborative mindset so you can problem-solve together.

Life beyond the classroom

Even though they can be challenging environments for individuals on the spectrum, extracurricular activities are a fabulous opportunity to practice the interpersonal skills that kids on the spectrum often find challenging. Scouting, sports, music, theater, church activities, and interactive gaming (such as D&D) are all great ways for kids on the spectrum to expand their skills while practicing social interactions with peers.

Extracurricular activities and social events can pose challenges for children with autism, but they also offer vital opportunities for social learning and peer interaction. Before signing your child up for an activity, you might want to look into the organization’s mission and values statement. For example, does your local Boy Scout or Girl Scout Council state openly that they welcome ALL youth, and work to make Scouting a positive experience for everyone including neurodiverse youth? It might take some poking around to figure this out, but it’s worth doing beforehand.

For many students on the autism spectrum, access to vocational training and practical job skills in school can provide a lifeline to successful adulthood. See if your school district or other local providers offer a transition to work program disability, which can prepare students for life beyond school by teaching essential skills for employment and independence. These specially-designed programs can be critical stepping-stones to help youth with autism learn and practice the skills they’ll need as adults, both on the job and in their personal lives.

How Can I Support My Child With Autism At Home?

A supportive home environment can significantly ease the daily experiences of a child with autism. There are several ways you can help make your home into the oasis your child on the spectrum needs:

Establishing beneficial routines and environments

Children on the autism spectrum thrive with predictable routines. Having structured routines lets them know what to expect, which can help lessen anxiety and make it easier to get through the day. This is especially important for times of day that are often challenging, like getting out the door in the morning, getting ready for bed, or actually going to sleep at night.

RELATED POST: How to Get Your Kid to Go to Sleep

As you think about establishing helpful routines, keep in mind that kids on the spectrum may need more time to decompress than neurotypical children. A long day at school, where they constantly have to interface with others, can be especially draining. While it might be tempting to ask your child all about their day as soon as they walk in the door, they may be too exhausted and overwhelmed to talk about it.

Try letting them be by themselves for awhile, and save the “tell me about your day?” conversation for dinnertime. (This is also a great strategy for practicing conversational skills as a family.) Teenagers might want to spend time in their room listening to music. Younger kids may benefit from a Lego corner or a place where they can work on jigsaw puzzles.

This leads to my next suggestion:

Creating autism-friendly spaces

Some children with autism are highly sensitive to light, sound, or texture. If you haven’t already observed what triggers your child, ask them what overwhelms them. Too much light? Maybe dimmer switches are the solution, or using fairy lights instead of brighter lamps and overhead fixtures. Too much sound? Perhaps your child on the spectrum would benefit from noise-cancelling headphones or earplugs to dull the noise around them. (Discreet, adjustable earplugs like Loops also work great for school.)

RELATED POST: Why All Parents Need Earplugs (In Bulk!)

Well-defined play, relaxation, and learning spaces can also create a sense of security and belonging. If you don’t already have your home, your common areas, and/or your child’s room set up this way, think about establishing “zones” for different activities. As appropriate, involve your child on the spectrum in the decision-making process. Your creative child may want a specific art creation zone. Or your school-aged child may need a better homework station than their current setup, specifically one with fewer distracting sights, sounds, or smells nearby.

If at all possible, giving your child on the spectrum their own bedroom to decompress in is crucial. Many schools have a “break room” or “break corner” for kids who are overloaded and need some time to themselves; your child’s bedroom can serve this purpose at home.

Finally, think about whether your child finds certain sensory experiences or repetitive motions calming. A swing set, hammock swing, or rocking chair might be the perfect unwind place for them. Likewise, many children on the spectrum sleep better with weighted blankets or sleep pods.

Involving the whole family

Finally, it’s important to involve the whole family in understanding and supporting your child’s needs. Siblings especially need extra attention when it comes to developing your family’s strategy for life with a child on the spectrum. Too often, siblings can experience significant disruption in their own lives because of the child with autism’s outbursts, need for extra therapies, and the extra burdens of care that parents of a child on the spectrum experience. Siblings may benefit from counseling sessions where they can process their experiences, as well as group support sessions and workshops.

Positive reinforcement at home can help children on the spectrum feel safe and expand their capabilities. Celebrating achievements and encouraging independence within a safe environment nurtures self-esteem in children with autism. Providing opportunities for your child to make choices and take on appropriate responsibilities can bolster their confidence and skills for daily living.

In addition, it’s important that your entire family – including your child on the autism spectrum – acknowledge the special and unique gifts that accompany ASD. Many famous people throughout history would not have achieved the things that made them famous without their autism spectrum habits and ways of being. Celebrities past and present with confirmed or (for historical figures) suspected ASD include actors, comedians, writers, athletes, scientists, and entrepreneurs.

The bottom line:

An ASD diagnosis opens up a whole new world of challenges for your child – but also a new world of opportunities. There ARE resources available to help your family navigate this journey. Advocating for your child and working to adapt their environment and schedule to their needs will provide them the opportunity to thrive.

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