By Bethany Stacey
Throughout school Richard Brissette of Madison struggled with reading comprehension and decision-making. His mother moved him to various schools trying to find the best fit for him as his needs stretched beyond academics. Brissette has mild autism spectrum disorder, or ASD.
“My worst memories, take-aways, are being bullied as an eighth grader in middle school,” Brissette said.
Brissette grew especially interested in mathematics, which pushed him towards success. In 1988, Briessette graduated from Bethel High School in Connecticut, just a few weeks after winning two gold-medals in the Special Olympics for running races.
Brissette now works as a data verification operator and will hit 35 years at his job in November, a date he’s calling his “agical milestone anniversary.”
After the death of his mother and main supporter in 2005, Brissette joined autistic community groups in Madison with the help of Nancy Alar, a community advocate for adults with autism. Being able to make friends and attend community events has brought him much joy.
Now someone who advocates for himself and others like him, Brissette emphasizes the need to show compassion to individuals with autism, even if you struggle to understand them.
Brissette noted that when young people have autism, it can be a scary experience. “When people become sad, lonely, perplexed. [When they] become confused or even angry, uptight, or having their own meltdowns,” they might begin “ stimming, screaming, crying,” and sometimes those behaviors can be a “reason why some people don’t understand what autism is,” Brissette said.
Brissette emphasized how a diagnosis and the right resources can let individuals with autism thrive. Therapies are a great place to start but in-home and at-school interventions can create increased comfort for individuals with autism. Finding a community, like the one Brissette is part of, is paramount.
Where to start
Each individual with autism is unique. So is the diagnosis. While it is possible to receive a diagnosis around as young as 18 months, the average child diagnosis occurs around age five, according to the CDC. Many other individuals do not get diagnosed until adulthood. While some individuals communicate freely, others are gestalt learners who process words in chunks, rather than one word at a time, and around 25 to 30% of individuals with autism are minimally verbal or nonverbal.
The well-being of a child is incredibly important to a parent, so it is natural to feel scared or uncertain about the future for your child. Understanding the resources that meet your family needs will help you advocate and care for your child.
From medications to IEPs to community groups, there are a plethora of pathways towards success for a child with ASD. If your child just received an autism diagnosis, these options may feel overwhelming or even paralyzing. A common sentiment of the parents interviewed is the need to be “in the know.”
“I just remember how alone I felt in the beginning because I didn’t have any friends. I didn’t know anybody who had an autistic kid. I didn’t know anyone who had autism. And I remember saying, ‘I never want another parent to feel that way,’” said Megan Hufton, director of community education and training at the Autism Society of Wisconsin. “If I can be your friend now I will. I owe it to my former self to do that.”
There are a variety of interventions. While some are low risk, like adding a stop sign on a door, others need more guidance, such as therapy. Assessing the riskto-reward ratio of different inventions will help you best accommodate your child. Distilling down the most pertinent interventions, their potential risks and benefits may assist you, your child and family, according to Dr. Kathleen Kastner, a developmental pediatrician at UW–Madison’s Waisman Center.
After getting a diagnosis, a great next step is creating a care plan. Your plan will vary based on the age of your child, but the process is roughly the same, according to Dr. Kastner.
She suggested asking a list of questions:
- What is the goal?
- What is this intervention supposed to help with?
- Is that an important goal for my child, for my family, and does this fit with that idea of neurodiversity acceptance?
- How does this fit with our priorities as a family overall?
- How can we access this intervention? Is it available in the community?
- How much time, money and energy would be needed to access this?
- Is it realistic for our schedule and our resources?
- Does it detract from other things that are really a priority for our family?
Your child’s strengths should be front and center when assessing their needs. This creates a plan that is more conducive to success, according to Kastner. Your child’s need complied with your own makes an incredibly unique, often delicate situation.
“I see families putting so much pressure on themselves in the beginning. ‘We have this diagnosis, we have to figure it out immediately. We need therapy to start like tomorrow.’ And it gets so overwhelming,” Hufton said. “I always try to talk to parents about it and remind them as simple as it sounds, it’s a marathon, not a sprint.”
Therapies
The ranges of symptoms and intensity of autism are vast. Certain autistic individuals graduate from college and have families, while others require a full-time caregiver. Therapies for symptoms of autism also range in intensity. Some therapies require 30-hours a week of commitment and others are more approachable, according Dr. Lily Wagner, director of the autism and disabilities clinic at the Waisman Center.
Applied behavioral analysis, or ABA therapy, uses principles of reinforcement to support learning and development, according to Wagner. ABA is a common treatment for autism with a robust base of evidence, but it is not the only option, she added.
Naturalistic developmental behavioral interactions, often referred to as NDBIs, build off of behavioral principles used in ABA but emphasize “naturalistic, play-based contexts,” according to Dr. Wagner. The Early Start Denver Model, is an example of an NDBI that can help teach independence in a systematic way, according to Wagner.
Other children may benefit from occupational, physical or speech therapies, according to Hufton. Wagner also noted that for some, cognitive behavioral therapy, or CBT, can be helpful.
Depression, anxiety and ADHD can occur at an increased rate in children with autism, according to Madeline C. Barger, director of the Waisman Center’s adult autism program.
“While there are no medications that treat the core features of autism itself, medications can be helpful in addressing specific co-occurring symptoms,” Wagner said.
You do not have to put your child into a therapy that is “strictly for autistic individuals,” according to Wagner. By focusing on the individual experiences and challenges your child faces you can better choose an intervention. Making sure you choose an evidence based approach that focuses on your child's strengths and needs is most important.
Depending on your child's needs, an intervention that focuses on communication, behavior, anxiety or daily function may be best suited. It is about treating the symptom and not the diagnosis, according to Wagner.
“One way to encourage parents is to encourage them to be accommodating, to hopefully deter their child from developing increased anxiety or depression, as much as I can at home or as much as I can at school,” Wanger said. “Making that decision to just be not overly, but more cautious than maybe you would be with a neurotypical child.”
By talking to different providers, you can find the care that best aligns with your family’s needs and access. It is important to find a provider who understands autism, although they do not have to specialize in it to be able to provide comprehensive care, according Barger.
Finding a provider that aligns with your values and goals will help both you and your child. Carl Graepen, father of two young autistic children, recalled the experience of trying to find a doctor who works for them.
“We have learned how to advocate. We are speaking in healthcare speak, and once we are able to do that, we very quickly terminate services with people who do not get it,” Graepen said.
Talk to the provider to see if their values align with yours before you enroll your child, ask about a suggested therapy’s evidence of success and if the recommended therapy might come with any risks, Kastner suggested.
Remember, too, what works for other people may not work for your child.
“If you are in a panic, don’t make a decision about what to do. I got to a point where I’m so panicked, I enrolled [my son] in something that some parents told me was amazing. I will call it woo-woo therapy, and it was really stupid and very expensive, and it did nothing except make him throw up,” said Mara Anfield, a mother of two autistic adults.
In-home interventions
A healthy family and home dynamic is incredibly important for quality of life for all children, but particularly those with autism. At-home interventions can be super simple. Hufton suggests a daily schedule where the child can see it, adjusting a night routine to make it easier on the parents and adding a small sensory zone for the child. These tend to be incredibly low risk, according to Wagner.
The compilation of these can make home more comfortable for both the parents and the child as co-regulation—compromise between the sensory needs of each individual in a household—can be incredibly difficult for certain families.
“My daughter has a pitch. We had a respite person who had an Apple Watch that tracked decibels. My daughter’s voice hit decibels [so high] it triggered the alarm [on the] watch. It is zero to 200 in a half second. And we’ve worked on it. That is the most difficult sensory issue for us,” said Graepen.
Brissette mentioned that visual cues can be incredibly helpful for himself and other autistic individuals. Wagner suggested adding a green sign on a door for when a room—or an item, such as the TV— is ok to use, or a red stop sign to signify when it’s off limits.
“I think being really consistent with our expectations and really consistent with consequences. I think deciding what consequences you want to issue for what behavior and staying really consistent with that. It is really helpful for teaching,” Wagner said. “I think it’s all about just identifying skills and behaviors to teach. And sometimes autistic children just have to be taught more explicitly than other children.”
While these interventions can be comforting for many children, it is important to determine what works best for both the child and the family.Focus on balancing your own needs alongside your child’s. Of course, compromises for your child will be necessary, but taking care of yourself will lead to a better quality of life for you and your child, according to Hufton.
IEPs and schools
School can be a volatile place for an individual with autism. A lack of control, increased sensory input and transitions compiled with rigid curricula can make school a minefield of stress for children with autism, according to Anna Moffit, who used to work for Wisconsin Family Ties and is the mother of two adult children with autism. Still, there are ways for children with autism to have a more comfortable experience at school.
The first thing that many families are told after a diagnosis is to seek an IEP, or an individualized education plan. IEPs place children into the special education program at school and are unique to each child. IEPs are the main function in which children with autism are given respite at school, but your child may not qualify.
Dr. Nancy F. Molfenter, associate superintendent of student services with the Madison Metropolitan School District, discussed the importance of understanding that not every child qualifies for an IEP, but even if they don’t, the may still qualify for a 504 plan. These plans provide accommodations to students, such as increased test times or breaks, enrolled in general education classrooms.
Getting an IEP may take up to 90 days, according to Molfenter. This process was cited by parents as exhausting and often confusing.
“My first IEP meeting was a blur. It’s not the fault of the school district—I want to emphasize that. Navigating the emotions around your child’s challenges, having these meetings and big discussions in front of strangers—it’s pretty daunting,” community advocate and mother of two autistic children, Signe Mbainai, mother of two autistic children and community advocate said.
Schools are bound by law to provide disabled individuals with the resources they deserve but budget cuts, staffing shortages and even misunderstandings of law often place parents in a position where they must advocate for their child, according to Kate Szidon, a facilitator and content expert at the Waisman Center.
Still there are many special education teachers and aids who work hard to ensure all their students are taken care of. Moffit had to actively advocate for her son, saying that his teachers and her understanding of the system was pertinent to his success. She notes this may not happen for every family.
“There was a point in time where we really had to advocate for additional people from the district to come in and help his teacher understand how she can work with him and support him so that he wasn’t having these big behaviors at school,” Moffitt said. “He’s matured, things have gone much better,” and “I know for him, at every level, his teams have been very much dedicated to him.”
Some families may find that home school works best for them and their child. Success will be defined differently for each child, so it is important to develop goals that are individualized, not just based on neurotypical expectations, according to Kastner.
School supports need to be individualized for autistic children. Certain children will benefit more from focusing on life skills, such as laundry, cooking and cleaning, according to Hufton. And it is OK if that changes from year to year, from grade to grade, according to Kastner.
Community
Autistic people have long faced discrimination, unproven “treatments” and in many places still lack the resources they need for success.
“Throughout history, autistic people have been subjected to unproven treatments, often with little to no benefit and sometimes which caused harm,” Kastner said. “So we want to make sure that any intervention is carefully evaluated for its potential benefits and risks, and the focus should be on accessing interventions that improve somebody’s quality of life.”
Here in Madison there are many advocacy groups that help autistic individuals and their families. Some provide direct services, such as the Waisman Center, which both researches and treats autism. The Autism Society of Wisconsin, on the other hand, mainly supports and directs parents to help them navigate providing for their child.
Social services, such as the Children’s Long Term Support Program, or CLTS, a state-run program, also provides services for children with disabilities whose families are on medicaid.
By advocating for your child, you are advocating for the success of other autistic children, according to Moffit. Speaking up against inequities or mistreatment of your child inherently educates others, she added.
Finding places to eat, play and shop that accommodate your child may help your child feel welcome and can help you feel more comfortable, Anfield said.
“We found that there were so many places that were so accommodating to him. He’s such a sweetheart. We went to one restaurant, but the minute we walked in they [the staff] would run to the table and rip away all the placemats and all the napkins because for some reason, he can’t look at the color white,” she said.
Brissette asks people to lead with love and care for autistic individuals.
Sometimes people “do not treat people with autism kindly, and that can hurt an autistic person’s image,” Brissette said but acting with compassion can be “very beneficial to an autistic person’s image. And, people, please treat each autistic individual with kindness, support, acceptance and love. Yes, love,” Brissette said.
