Diversity, Equity & Inclusion: April is Autism Awareness Month

“For every day in April, I wear a different autism shirt,” says Sr. Commercialization Manager Jessica Rieper . “It helps me engage with others who question me on the meaning of puzzle pieces, the universal symbol of autism.”

Jessica’s son, Isaac, is diagnosed with Autism Spectrum Disorder. “As an autism mom, it’s my job to show my son the world but it’s my passion to educate the world about my son.”

“My son, Isaac, is very routine-driven, and has breakfast with my dad every morning, sitting at the same table, same restaurant and ordering the same meal. They have befriended a group of elderly men who meet every morning for coffee, and through that networking channel this group of men now frequently ask questions about autism. They have all become good friends with my son, recognizing him around town, introducing Isaac to their wives as if they’re old and dear friends. These guys have become really important to my son’s daily routine in a way that never otherwise would have happened if it wasn’t for their willingness to understand something completely foreign to them. It’s pretty incredible what a little awareness and compassion spread around can do for those who wish to learn what they don’t yet know.”

What role do parents play in having their child diagnosed as autistic?

There was never a question, in my mind, that Isaac was on the spectrum and the emotions around that time period seemed so scary. But, like any parent, it’s my job to pick up and keep trucking on, so the first thing I did was call every organization I could to initiate services. Isaac began speech therapy, occupational therapy, and ABA (Applied Behavioral Analysis), and I engaged Heartland AEA through our school district to ensure he had a personal aide and special ed teacher to work directly with him while being integrated into a mainstream classroom. That took months of paperwork, evaluations, screenings, tests, more paperwork, more red tape – all while trying to work as a single mom. Definitely wasn’t the easiest or most memorable time in my life! In late March 2024, Iowa Governor Kim Reynolds took it upon herself to limit AEA services statewide, so I anticipate more red tape in our educational future.

What should parents do if they think their child has autism? What about after?

They should reach out. There is a tremendous network across the U.S., and now the world, recognizing autism and its challenges. Social media groups, networking advocacies, Autism specific organizations, parent groups, therapies, school resources, the list goes on...reach out! A parent's first step is to schedule a medical evaluation and take in all the information you can. As hard as it is, try to be a learner at this stage. Take in what you don't know; getting defensive won't change a diagnosis. There are mom/parent-groups galore out on social media, new studies being conducted all the time, and a plethora of studies and information. I sign up for studies all the time through SPARK, an autism research organization, to stay abreast of the latest and greatest. I'm not na?ve enough to believe that Autism isn't an ever-evolving diagnosis.

What are some of the challenges you’ve faced? How did you overcome them? Were you aware that these could be challenging?

To have the strength to recognize that something wasn’t right, and then to fight against all the stigmas and red tape to get Isaac what he needed – those were a few of the many challenges parents of a special needs child face. I called University of Iowa Hospitals, Mayo Clinic, and all the specialists I could find in the Des Moines area, and was told that we’d have to wait ~18 months for just the initial evaluation. Fortunately, through my personal networking, I was able to secure an evaluation within two months (I was relentless, failing my son was not an option). Isaac went through a battery of tests and was diagnosed that same day, after a half day evaluation and in-person appointment.

I started a Facebook group called Isaac’s World, to help share autism articles and raise worldwide awareness, as autism is unknown in some countries, and, of course, around certain parts of the U.S. I also gave a lecture at Drake University, through their graduate program for Occupational Therapists, about the challenges parents face when having a child with special needs. I get asked some pretty direct questions from future therapists who really want to understand what some of us special-needs parents are feeling when we walk our child through their doors for services. It’s a combination of constant fear and defensiveness, all mixed in with hope, topped with a swirl of exhaustion and a cherry on top!

Are there enough resources to help families with newly diagnosed children?

I don’t know that there are ever enough resources when you’re up against such an unknown world. I’ve had to battle Iowa Disability (DHS - Department of Human Services) to obtain services for my son while facing red tape at virtually every turn. Gov. Reynold's recent AEA changes only make it more challenging for us. That, in conjunction with her "school choice" bill, resources are being limited more and more. Parents really become front-line warriors and advocates for our children with disabilities. It’s a constant uphill battle to balance work life, home life, special education life and mom life. I can tell you that you figure out quick who is, and is not, a true friend when you become a parent of a special needs child.

What advice would you give other parents?

Go about life as “normally” as possible, and don’t try to overcompensate out of guilt, shame or sadness. You will have bad days. Separate out bad days for just normal vs. bad days because of being a parent to a child with special needs. Sometimes, I think we get so wrapped up in our own grief that we forget our kids are also just kids; we all have bad days, regardless of a diagnosis. Pick yourself back up and keep on keeping on, nobody else will get the work done.

This can be said about any parenting but as the parent of a special needs child, there’s an overwhelming desire to overprotect, or “make up for” their disability, and I frequently have to remind myself that it’s ok if my son fails sometimes. Actually, I need to embrace him making some mistakes along the way because we all error in our lives. While some accommodations might have to take place, always try to remember: "home" is your child's “safe place.” Home can’t be replaced and that’s where your child will always go to for safety and security. There are many studies that show kids are particularly naughty at home, because it is their safe place, and better behaved elsewhere because they know they have rules to follow. So always remember, if your child is well-behaved outside of home or away from you, but seemingly naughty around you, you are their safe place; you are your child's place for comfort and support, to let loose. And don't we all need places to just let loose sometimes?

Also, explore what options your special needs child has, start therapy as early as possible, accept that the diagnosis is a part of your child but does not define your child’s abilities, and reach out for help. I am always surprised in conversations with other parents, when I learn they are not using services available to them. They either are unaware, or unsure of what to do, where to go, or who to ask. As an autism advocate, I’ve taken countless phone calls from other (new) autism moms struggling to even breathe and I always offer up the same advice: take it one step at a time in any direction because there is no right direction when it comes to parenting an autistic child.

What would you like the general population to understand about people with autism?

Autistic children are very aware, even if they cannot communicate it, so always be careful what you do, say and portray around an autistic child/person. Actually, if we could all learn to be more aware of what we say to others, we may learn that kindness goes much farther than we believe. Autistic persons, they’re listening and paying attention, and autistic children are VERY intuitive. Never underestimate an autistic person, they will surprise you when you least expect it – sometimes in the funniest ways imaginable. You’ve seen Rain Man, right? My son does that to me and blows my cover every once in a while! I can't eat that last piece of chocolate cake and get away with claiming otherwise, he will rat me out every time!