Autism Spectrum Disorder (ASD) is a developmental disability, which has a life-long impact on those who are diagnosed with it as well as their families. According to the National Institute of Mental Health, people with ASD find it challenging to communicate and interact, may have restricted interests or repetitive behaviors, or exhibit other symptoms that affect their schooling, work, and social life.
However, as ASD is a spectrum, the extent of the symptoms a person shows can vary widely. This has led to a categorization of ASD into three levels, with level one being high-functioning individuals who require a certain amount of support, and level three being individuals with substantial support needs, such as nonverbal autism.
The importance of early diagnosis
Although children generally start showing symptoms at around two years old, the average age for diagnosis is closer to five years old. Many go much longer without diagnosis or are never officially diagnosed at all. This is something that Cynthia, a mother of a child with autism, has noted.
“Parents are often looking for answers and trying to solve things on their own without the neuropsych evaluation,” she says. “That’s the diagnosis. It’s important to begin the process and get the right treatment because without a diagnosis, you’re not going to get that next level of care that’s needed.”
First signs for Cynthia and Sadie
For Cynthia and her daughter Sadie, the signs first started when she was in the first grade. She and her husband noticed that Sadie’s “reactions to things were much bigger than other kids.”
This is what’s known as “size of the problem,” where the reaction to the issue at hand doesn’t match what has actually happened. While it is common for children to have more exaggerated reactions than adults, Cynthia began to wonder if Sadie’s responses went beyond what was normal.
“We weren’t sure what was normal,” Cynthia says simply. So, they decided to carry out a neuropsych evaluation. The results, at that time, came back that Sadie had ADHD and anxiety and the family began working with a psychiatrist for medication management.
It wasn’t until Sadie was in the third grade that the psychiatrist recommended she take another neuropsych evaluation with a specialized psychiatrist, as Sadie was struggling with social communication, creating friendships with peers, and was continuing to have “big” reactions.
The results came back and, alongside ADHD and anxiety, Sadie was also diagnosed with Autism Spectrum Disorder (ASD).
The challenges of raising a child with ASD
A 2008 study confirmed what parents with children who have ASD already know – it can be highly stressful.
The study found that, the parents of children with ASD reported “higher objective and subjective burden, more frequent psychological distress, lower social support.” The negative effects also extended to “spiritual well-being and hardiness.”
While the child’s care is paramount, parents also need to take their own mental health seriously.
Dealing with a child on the spectrum can be an exhausting experience for the caregivers, with progress often being very slow. As Cynthia says, “Sometimes, I have to say ‘mom’s taking a time out’ and take a breather in the bathroom.”
This is why it’s so important to get an official diagnosis, as it opens the doors to a huge range of treatments to support both your child and your own mental health.
Individualized Education Program (IEP)
A child who is diagnosed with ASD can get access to the IEP or Individualized Education Program. The purpose of the IEP is to ensure that children with an identified disability get specialized instruction and related services during their schooling.
In Illinois, the level of support your child receives is dependent upon a school psychologist doing their own evaluation. Based on this, the child will qualify for certain support, whether extra time to finish exams or a private room, a specialized chair, or the number of minutes they get access to speech therapy, social work, etc.
The IEP has been of great help to Cynthia and Sadie, although Cynthia does recognize that it can be difficult at times and other parents have had to work harder to get the necessary support.
“Parents need to fight to get things included in the IEP,” she admits. “Often the district doesn’t want to put the money out, which leads to conflict.” If this happens to you, you can get access to an IEP advocate who understands how to escalate and will work on your behalf.
Applied Behavior Analysis (ABA)
Not all support is available through the education system or public bodies. Applied Behavior Analysis, for example, is generally available through insurance, as is the case with Cynthia and Sadie.
Cynthia recognizes that the approach has its critics, but claims it has been very helpful in their situation. She describes it as “microtherapy,” where the child is very slowly taught desirable behaviors on a daily basis.
She uses the example of sharing, explaining that it isn’t that the child doesn’t want to share, it’s that “they don’t understand the concept.” So, through ABA, they may put a toy on the table and over the course of a few weeks, they will touch the toy until this action is “tolerated”. Then, slowly over time, they will escalate to moving the toy closer to them. In this way, the child becomes accustomed to sharing the toy with others.
The use of ABA has helped Cynthia to communicate in terms that Sadie understands, with a prime example being the use of colors to express emotions. When Cynthia feels overwhelmed, she can say “I’m moving from the yellow zone to the red zone” and Sadie will know that Cynthia needs some time for herself.
Organic social-support networks
Cynthia is thankful for the professionals who have supported her and her family in raising Sadie. But there are other avenues that people can use to tap into a wider community.
“Social media makes it easy to connect with parents,” Cynthia says, referring to others in similar situations and adds that she personally connects with some neighbors. Networks of these kinds can be an invaluable source of social support, where they can share advice and help each other when times get tough.
As for her own advice, Cynthia says that, above all, you need to “make a conscious effort to stay calm. Ooze the calm. Fake the calm until you feel it.” If you are expecting your child to lower the tone of their interaction or reaction to certain stimulus, you need to model the correct behavior.
There is no question that it can be difficult, but by making use of the resources available, families who have children with ASD can live happy, fulfilling lives. Sadie, who is now in the sixth grade and almost 12 years old is doing well, supported by a loving family and with a range of professional support.
Are you concerned about your child?
If you suspect your child may have ASD, please reach out to your local doctor or school services to get an evaluation. This is the only way to ensure your loved one gets the support they need.
Caregivers and parents can also seek out the resources provided by The Autism Program of Illinois (TAP) Service Network. TAP is a collaboration of 5 universities and 11 organizations that together operate 20 centers across the state to provide services to children, families, educators, childcare providers, and medical professionals.
For any other questions or comments, you can visit the MHAI website at www.MHAI.org, or reach out to us at 312-368-9070 or info@mhai.org.