Autistic children all over the country are falling through the cracks.
I’m talking about the ones labeled as “high-functioning”, which is already a problematic term. They are better described as autistic children who are verbal and can do many things with little or no support. But trust me, they still need support.
How We’re Failing Our Autistic Children
These kids are going unnoticed, being misunderstood, and missing out on valuable resources and programs that could help them reach their full potentials.
You probably haven’t noticed this.
Unless you’re the parent of one of these children. Then, you’re probably carrying this burden on your shoulders, too. Just like I do.
What is happening to our kids? For one, as they make their way through school, they’re learning to mask their personalities, attempting to act “normal”.
This expends a great deal of energy which negatively impacts mental health. They’re being labeled as the “outcasts”, the “loners”, the “problem child” and the “weirdos”.
Many autistic children who require little support are not even diagnosed until they’re much older and may even be misdiagnosed.
Why is this happening?
There are a few things that seem to frequently happen which causes society to fail these children. There are also some changes that, if brought about, could help solve this problem.
1. Missed warning signs
The signs of autism aren’t always as obvious as many believe. It’s more common than people realize for kids to have advanced language skills and academics but struggle significantly with sensory processing and/or self-regulation.
These kids are labeled as being defiant or bad. People assume they just didn’t receive enough discipline from their parents. As a result, their poor social skills don’t become obvious until they’ve entered school. At school, they may get sent home or suspended frequently for their behavior.
The symptoms of autism don’t always show until the demands placed on the child exceed their level of ability.
2. Late Diagnosis
According to this British study, the average age when an autism diagnosis is confirmed for autistic children who are verbal and require minimal support, 11 years. At 11 years old a child has already spent 6 or 7 years in school, depending upon where they live.
That’s 7 years of education without the correct accommodations or adaptations to help them succeed. That’s 7 years of missed time where valuable social skills and self-regulation skills could have been taught.
Ideally, with early diagnosis, kids receive intensive intervention services before entering the school system. However, those services are unavailable at 11 years old.
Basically, we’re doing too little too late.
Sometimes, children are first misdiagnosed with other disorders such as ADHD, OCD, ODD, or Generalized Anxiety Disorders.
This is happening due to the overlap of symptoms amongst all of these disorders. Plus, before the DSM V, sensory processing difficulties weren’t included in the diagnostic criteria for autism. The greater emphasis has always been placed on language and communication skills.
Even with poor social skills, children with HFA can often act social or “typical” when they’re in a 1 on 1 situation with an adult, such as during an ASD screening.
For many kids, this is the perfect social environment for them. They are basically in their prime.
It’s quiet, there are few distractions, the adult is asking questions that open the opportunity for the child to show their high intelligence. Plus, they’ve learned to mask or imitate social nuances from their peers.
When a child receives a misdiagnosis, it may take years before confirming the correct diagnosis. During that time, parents often try different medications and therapies to help their child, with little success.
4. They frequently have their diagnosis questioned by others
It happens all the time, as many parents can confirm. People will say “Are you sure they have autism? They don’t look autistic” or “They can’t be autistic because they made eye contact with me once”, etc.
There is still a significant lack of awareness when it comes to autism, often people expect kids to either be completely nonverbal or to have some kind of prodigious talent (That’s savant syndrome by the way)
There seems to be a lack of understanding when it comes to the in-between. Then people outwardly challenge the diagnosis because their behavior doesn’t fit into society’s stereotypical profile of what an autistic person should look like.
Their Needs are Viewed as Less Urgent
Unless you can afford very expensive private services, public health care typically triages children for services and places them on a waiting list.
As a result, autistic children requiring less support often wait longer for services because their needs appear less urgent.
What needs to change?
How can we help stop autistic children from falling through the cracks? I can think of a lot, the system itself is inherently flawed and society is misinformed. However, these few suggestions at the top of my list.
1. Ditch the labels
Technically, the labels were ditched and replaced by levels from 1-3 which indicated the “level of required support” but society hasn’t ditched these labels yet.
It’s true, all autistic people are so unique that it’s hard to group them together – but it’s harmful not to. It leaves everyone with low expectations for people who are “low functioning” or “severe”, and it leaves everyone dismissing the challenges those who are “high functioning” or “mild” face.
That’s unfair to everyone.
2. Increase Awareness
Parents, educators, care providers, and doctors all need to be more aware of the different challenges experienced by children with autism. Earlier recognition leads to an earlier assessment, which leads to earlier intervention opportunities.
When kids start getting extra help for their additional challenges at a younger age, it’s easier for them to learn appropriate skills and manage issues effectively.
3. Open conversations about acceptance at school
Depending on who you ask, the prevalence of autism is somewhere between 1 and 48 to 1 in 64. Either way, autism is common.
Schools need to start, from day one, having open conversations about autism, and neurodiversity, teaching students that those differences are okay. Children shouldn’t feel embarrassed to flap their hands, or put on noise-reducing headphones, or leave the classroom for a break.
That kind of thing needs to be normalized.
More open conversations from a young age would help decrease bullying. When children can feel comfortable and accepted while being their true selves, there won’t be a reason to mask anymore. Then everyone can be more accepting and happy.
It just seems like current resources aren’t meeting the level of current demand. They are also subpar to current research.
It takes years to review new research and implement the findings. But, we need to do more now.
Autistic children have many incredible abilities and they are going to grow into autistic adults. Some of the greatest minds in history are thought to be autistic. We need to do everything we can to help kids today reach their potential.