Recent data tells us that 1 in 59 children in the United States has autism spectrum disorder (ASD). According to the Autism Society, symptoms of autism typically become clearly evident during early childhood, between 24 months and 6 years of age. These symptoms include a marked delay in language and cognitive development.
Though the exact causes aren’t known, scientists believe that both genetics and our environment play a role.
For the parents of children with autism, this diagnosis can present a unique set of challenges that range from emotional to financial. But for those with neurotypical children — individuals of typical developmental, intellectual, and cognitive abilities — these challenges aren’t often well understood.
So we asked parents within our community to answer questions frequently associated with the disorder to shed a little light on what it’s like to raise a child with autism. Here’s what they said:
What is autism?
Autism is a condition in which the brain’s neurology works differently. It’s not to be confused with learning difficulties. People with autism can have normal or even advanced intelligence, and certain skills that are more developed than the general population.
However, they struggle in other areas. These include difficulties with communication, social interaction, and rigidity of thought. Rigidity of thought is particularly problematic for autistic people because it causes them great anxiety when facing change.
People with autism can also process their environment in a slightly different way, often termed as “sensory issues,” or sensory processing disorder (SPD). This means that their outer behavior sometimes reflects inner experiences that the rest of us can’t see. We’ve learned much about these sorts of experiences from autistic people themselves, including Temple Grandin, author of the ground-breaking “Thinking in Pictures,” and Naoki Higashida, who more recently penned “The Reason I Jump.”
Why do people with autism talk late or not at all?
Sometimes people with autism can have physical language difficulties, including dyspraxia. Often the desire to talk, however, isn’t present as it is for the rest of us.
Autistic children don’t realize that other people’s thoughts differ from their own. Therefore, they don’t see the point of communication. As a result, a lot of early interventions in speech and language therapy are dedicated to helping children to understand that sharing their thoughts through vocalizing, and using signs or other signals, helps them to get what they want.
Bio: Aukids magazine was founded in 2008 by parent Debby Elley, and speech and language therapist Tori Houghton. Its aim is to give easy, impartial, practical advice to parents raising children with autism. In April 2018, Elley’s book “Fifteen Things They Forgot to Tell You About Autism,” was released. The book, she says, is about “all the things I wish I’d been told sooner, [and] the things about autism that [were] explained poorly or not at all.”
Is there a cure for autism?
While there’s no known cure, intensive and early intervention has shown significant improvements in outcome. The most effective therapy is known as applied behavior analysis (ABA) therapy.
Other therapies such as speech therapy, social skills classes, and assisted communication can help with the acquisition of communication and social skills. Not all therapies are covered by insurance and can be prohibitively expensive for families.
How common is autism and why is it so prevalent?
[Autism] is more prevalent than type 1 diabetes, pediatric AIDS, and childhood cancers combined. Some experts believe this is due to increased awareness, and therefore an increase in the number of accurate diagnoses. Others believe it’s the result of the increased number of environmental toxins combined with genetics, known as epigenetics.
Bio: Nancy Alspaugh-Jackson is the executive director of ACT Today! (Autism Care and Treatment), a national, nonprofit organization that provides care and treatment for families challenged by autism who cannot access or afford the necessary resources. A former television producer and author, Alspaugh-Jackson became an advocate and activist when her son Wyatt, now 16, was diagnosed with autism at age 4.
Is there a diet to follow for someone with autism?
The most basic diet, which is often called the “autism diet,” is gluten-, dairy- and soy-free. I recommend you remove the items one at a time, and know how long it takes to get them out of your system. Gluten can take up to 3 months or more, and dairy (any items with or derived from milk) can take about 2 weeks, though soy can be eliminated in a few days.
I also recommend lowering sugar intake and removing artificial flavors, dyes, and preservatives. Cutting these out of my child’s diet had a positive impact on their cognitive functions as well as behaviors.
That said, every child will have a different sensitivity. The best you can do is to feed your child a clean, real food diet — incorporating lots of fruits and vegetables (organic, local, and in season when possible), and grass-fed or pastured meats. They should eat seafood in moderation and you should make sure it’s low in mercury and other contaminants.
There’s no current scientific proof showing the efficacy of diet for treating people with autism. However, some people believe it’s helped them or their children manage the condition.
What are the unique challenges of raising a child with autism?
Autistic children often have a group of common challenges that other children with disabilities may not experience. These include:
- sensory issues that are strong enough to impact:
- how or when they wear clothes
- skin sensitivity
- the inability to understand facial expressions and communicate certain needs and feelings
- the inability to understand danger
- gut issues that can result in late toilet training, toilet regression, constipation, and diarrhea
- problems with sleep or circadian rhythms
- difficulty transitioning to puberty, which can mean regression (social, medical, behavioral) or aggression
- behavioral issues caused by something going on in their bodies
- resistance to any sort of change or break from routine
Bio: Gina Badalaty is the owner of the blog, Embracing Imperfect. As a long-time personal and professional blogger, she shares her journey raising her daughters, even with the challenges that their disabilities present.
What are the kinds of therapies for autism, and what’s your experience with them?
When my son Oscar was diagnosed, I had this totally unrealistic expectation that a team of therapists would descend on us and work together to help him. In reality, I had to push for the therapy we would eventually receive.
At 4 1/2 he was deemed “too young” in Holland for most therapies. However, on my insistence, we eventually started with speech therapy and physiotherapy. Later we worked with an occupational therapist who visited Oscar at home. She was excellent and gave us lots of tips.
After a very difficult conversation with Oscar’s doctor at a revalidation center we were finally offered multi-disciplinary support by them. I had to really push for this as he was deemed “too good” to be seen there. This center was able to offer speech, physiotherapy, and occupational therapy in one place. He made excellent progress at this point.
At the age of 7, he was offered therapy to help him to understand and come to terms with his autism. This was called “Who Am I?” It was an excellent opportunity for him to meet children with similar issues and to help him understand why he felt different to his peers. He also received cognitive behavioral therapy for anxiety issues. These were 1-on-1 sessions with a therapist that were invaluable. They really helped him to focus on the positive aspects of his autism, and to see himself as a boy who has autism rather than focusing on the autism itself.
For us, the multi-disciplinary approach has worked the best. That said, there are so many children that need support and not enough therapists to give it. I also feel that parents are under a lot of pressure to become the expert and coordinate care for their child. I would like to see a system where families are appointed a health professional who takes on that role and ensures the child is receiving the support they need.
How did you cope when you were told your child had autism?
I know that before diagnosis there were so many conflicting thoughts running through my head that I didn’t know what to think. The signs were there and concerns would pop up, but there was always an answer.
Why isn’t he speaking as much as other children his age?
He’s bilingual, it will take longer.
Why doesn’t he respond when I call his name?
Maybe there’s a hearing problem, let’s check it out.
Why doesn’t he want to cuddle with me?
I wasn’t a cuddly baby according to my mum, he’s just active.
But at some point, the answers started to feel like excuses and the doubt grew and grew until it consumed me with guilt. I felt like I wasn’t providing what my child needed. He needed something more.
My husband and I agreed that we couldn’t ignore it anymore. We knew something wasn’t right.
In the early days of diagnosis, it’s easy to grasp onto the label so hard that you’re in danger of losing sight of what really matters, what’s really important: your child. Your world becomes filled with autism.
As parents, you spend so much time focusing on the problems, laying out the negative behaviors — to psychologists, therapists, doctors, teachers — that it becomes all you can see.
The information you’re given is scary. The future, your future, their future has suddenly changed and is now filled with a type of uncertainty that you never knew. It can draw you in and fill you with anxiety. All you can see is that badge.
I didn’t want people to look at my son and just see that badge. I didn’t want it to limit his life! But it’s simple: Without this badge, you don’t get the support.
For me there was a point when I changed. A point when I stopped focusing on the autism and looked at my child for who he is. At this point, the badge began to get smaller. It never goes away, but it becomes less scary, less significant, and feels less like the enemy.
In the last 9 years, I’ve learned that nothing works out as expected. You simply cannot predict the future. All you can do is give your child your love and support, and let them amaze you with what they can do!
Bio: Catie is an “expat mum,” wife, and teacher from Middlesbrough, England. She’s lived in Holland since 2005 with her husband and their two boys, both of whom love computer games, animals, and are bilingual. They also have Nova, their very spoiled dog. Catie writes honestly and passionately about the realities of parenting and campaigning in her blog, Spectrum Mum, to raise awareness of autism by sharing her own family experiences.