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Challenges Parents Face When Raising a Child with Autism

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Parenting isn't ever easy and caring for a child with Autism Spectrum Disorder (ASD) is even more challenging. There are many things you can do to help a child with ASD overcome their challenges.

What is Autism Spectrum Disorder?

ASD is a condition related to brain development that affects how people interact with others, communicate, learn, and behave. The disorder also includes limited and repetitive patterns of behavior. Although autism can be diagnosed at any age, it is described as a “developmental disorder” because symptoms usually appear in the first two years of life. 

It’s quite common for children with autism to develop Sensory Processing Disorder. When my son was also diagnosed with (SPD) it was hard for me to wrap my head around the two disabilities. 

SPD is a condition that affects how the brain processes sensory information, such as taste, smell, hearing, touch, and sometimes includes things you see. It can affect all your senses or just one. People who suffer from SPD usually are overly sensitive to stimuli when others are not. 

There are three levels within ASD. My son falls under level 1 on the spectrum, which means that he can read, write, speak, and handle some daily tasks, such as getting dressed independently, eating, bathing, etc. It took years to get him to this point, with early invention. High-functioning autistic children, and their families, still have plenty of challenges. But because my son is high functioning, his challenges may not always be obvious to others around him. But when it is obvious, you’ll know.

In the midst of caring for your child and the rest of your family, it's essential that you take care of yourself. I did not do that in the beginning when my son was diagnosed with ASD at the age of two. No parent is ever prepared to hear that their child has ASD. In the beginning, I was uncertain about how to best help my child. I was confused, frightened, and concerned. What do I do? What is autism? How do I seek help? I felt guilty about his diagnosis because of my complicated pregnancy with hyperemesis gravidarum (a pregnancy complication that is characterized by severe vomiting, nausea, weight loss and dehydration and possibly child loss). 

I’ve learned to embrace ASD, gained patience, and accept him for who he is. Parenting itself isn’t easy, life is unexpected, but having a kid on the spectrum is unpredictable, especially for my son. It wasn’t easy teaching, giving directions, guiding him, or getting family members to understand, but I knew I had to be emotionally strong to be the best parent I could be for him. At times I didn’t know how to do that until I received help from professional experts, doctors, behavior analysts, therapists, and psychiatrists.

Our journey has been both challenging and rewarding, not perfect, that’s for sure. Remember, it’s okay if something fails because you’re learning together. Will you be judged? Yes, especially if your child is on medication or a natural supplement. Was it heartbreaking to make that decision for my child, of course! Did I hear things like, “There’s nothing wrong with him” and “Why would you put him on medication?” Remember, it’s always good to make the best decisions for your child and no one else. The decisions I made were the best decision for my son.

Were there times I wanted to quit? Yes! Did I feel alone? Yes! But deep down I was my son’s cheerleader and protective mother bear. I couldn’t give up on him even though I was so overwhelmed. My suggestion, if you’re ever feeling that way, is to never give up. It will get better. I’m rooting for you. 

Ways to Help Your Child Thrive 

I continue to support my son by learning all I can about autism and getting involved in early inventions to help make daily home life and life outside of the home (school settings) easier for both of us. I attended autism parent training classes through Easter Seals and St. Louis Arc, read several books, reached out to specialists, and received therapy through First Steps. 

Over the years I found out that I couldn’t do everything on my own. It takes a lot of energy and demand to raise a child with ASD and you don’t have to go through it alone! There are many places for families to turn to for support, advice, and advocacy. With the support from many organizations, I’ve learned how to care for my child at an early stage and I’m still learning now that he’s older.

Having visual cues, staying on top of his routines, being consistent, and creating a safety zone at home, with patience, provided the structure I needed to help my child thrive. Exploring the possibility of therapy with a highly structured schedule became my life. Most of my research came from the Diagnostic and Statistical Manual of Mental Health Disorders (DMS-5), Autism SpeaksEaster Seals, and books.

Tips for Parents

  • Seek support: joining a parent ASD support group is a great way to meet other parents and families with similar challenges and to lean on one another for emotional support
  • Create an autism treatment plan with professional experts that works for you and your family
  • Respite care: all parents need a break
  • Family counseling: therapy is a safe place to discuss the challenges of life
  • Be accepting
  • Pay attention to your child's sensory sensitivities
  • Be consistent
  • Create a home safety plan
  • Create a sensory toolkit
  • Be empathetic: listen and acknowledge struggles without judgment
  • Eliminate punishments
  • Learn and teach coping strategies when they are calm
  • Make them feel safe and loved

Nine PBS KIDS Videos to Watch

Nine PBS KIDS have several awesome shows that deal with autism. The CDC reports that 1 in every 54 children in the U.S. is diagnosed with ASD. It is quite common to have a child with learning differences. Here are a few PBS KIDS characters with ASD.

Max, from Daniel Tiger’s Neighborhood
Max is a new character with ASD. He loves buses, bugs, and he is sensitive to loud noises. Max needs a little extra time to respond to any questions his friends might have.

AJ Gadgets, from Hero Elementary
AJ is one of the four superheroes. He has the power of projection; he can think and understand all things in a fun and awesome way. AJ really hates having his clothes wet, he is sensitive to loud noises, and he must always have his backpack close to him. 

Julia, from Sesame Street
Julia made her entrance to Sesame Street in 2017. She’s a smart, kind, and loving puppet who adores spotting patterns, but has a tough time making eye contact and doesn’t respond to questions right away, just like our friend Max. The friends of Sesame Street are learning and figuring out many ways to play with her.

Resources from PBS KIDS

Watch the full episodes on the free PBS KIDS Video App or livestream.

Learn how to talk to young kids about autism

Free Sesame Street and autism printables.

These videos can offer insight into how people with autism think and process information:

Circle of Friends
Starfish Hug
Saying Hello
Let’s Play Together

There are other PBS KIDS series that discuss topics of children with special needs.

  • An episode of Arthur introduces Carl, a boy with special needs, who becomes friends with the lead character.
  • On the Dinosaur Train episode “Dennis Comes to Visit,” Tiny, Shiny, and Buddy have a visit from their friend Dennis, who is a dinosaur with special needs.
  • On Daniel Tiger, Daniel and Miss Elaina meet Prince Wednesday's cousin Chrissie during a playdate at the castle. As they play “knights,” they discover that, although Chrissie needs some help walking, they are the same in many ways.

 

PBS KIDS Games and Apps

  • Discover helping friends on Sesame Street.
  • Meet Prince Wednesday's cousin Chrissie on Daniel Tiger for a playdate.
  • On Dinosaur Train, Tiny, Shiny, and Buddy visit their friend Dennis, a dinosaur with special needs.

 

Additional Resources

Missouri Department of Health Resources Guide
Missouri Department of Health Office of Childhood
St. Louis Arc

 

My son is now 10 years old and heading to middle school this fall. He still struggles with social interaction, sensory frustration, and communication. Has there been any progress? Yes, a lot, and I’m proud of both of us for continuing to learn more every day. Like most children with ASD, Demarco have similar challenges like our PBS KIDS friends Max, AJ, and Julia. He doesn’t always read social cues or understand other people’s emotions, he still finds it difficult to make friends, and he gets so stressed by frustrating social situations that he shuts down. He doesn’t like his clothes wet or dirty nor does he make eye contact when having a conversation.

Now that he’s older, it’s difficult for him to understand his own diagnosis and we are still working on that area. Even with his differences, my son loves to read, work on puzzles, ride his bike, and carry his backpack around with his favorite action figures inside. People don’t realize how amazing kids with autism can be, how incredible their talents are, and how much more they have to offer the world. 

I am a parent of a child with autism, but I don’t have the power to make life easy or fair for my child. I do have the power to make his life joyful with love, understanding, and acceptance. 

My heart will forever go out to you. It won’t be easy, but remember you are not alone. If you want to learn more about Nine PBS resources, feel free to contact me.

Autism doesn’t come with a manual; it comes with a parent that never gives up.


Fatama Moorer, Parent Engagement Manager, Nine PBS
Office: (314) 512-9020
Cell: (314) 332-9613
Email: fmoorer@ninepbs.org

About Fatama

Fatama engages parents and partners in Nine PBS’s early education initiative, providing resources in child development for families in need. In addition, she creates early learning content, serves as a community-based intermediary for families, facilitates and coordinates Ready to Learn (RTL) experiences, and provides partner training. Previously, Fatama served her community by providing families with a community wellness shop. She has served on the Parent Advisory Board of Saint Louis Crisis Nursery, the FLOURISH Community Leader’s Cabinet, and the Generate Health Board. She holds several certificates in early learning, including Early Warning Signs of Learning Disabilities, the PBS Virtual Professional Learning Series, and Parent Advocacy. She loves hiking, yoga, and spending time with her kids.