Waiting And Worrying About Autism? What You Can Do Right Now

Years ago, it was relatively rare to encounter a child who had been diagnosed with autism, but today it’s very common. Fewer than two decades ago, we saw a prevalence of about 1 in 150 children, but as of 2014, that number jumped to 1 in 59.

What has happened to make these numbers climb so high? Although, there has been a change in the diagnostic criteria used in evaluating autism and doctors are referring toddlers at a much younger age, many argue that there may be other reasons why those numbers are climbing. The reality is, however, that we won’t truly have answers anytime soon, which doesn’t exactly help the families that are struggling right now.

One expert, Dr. Mary Barbera, a board-certified behavior analyst, best-selling author and the mother of a son with autism, has chosen to dedicate her life to empowering children (and their worried parents!) by providing practical, evidence-based options that can be used immediately to help turn things around.

Know the Red Flags

We are all individuals with our own strengths and weaknesses, which is true from birth all the way through the lifespan. Parents will know that all children develop at different rates and that, in most cases, it all works out in the end. Some kids are late walkers or late talkers, and with preemies surviving after being born earlier than ever, it’s common to see some kids needing a little extra time to catch up to their peers.

Eventually, though, a parent might find themselves wondering if their child’s delay might be something more. With this in mind, Dr. Barbera recommends that all parents get familiar with the expected developmental milestones for their child’s age.

Some of the red flags associated with Autism Spectrum Disorder (ASD) include but are not limited to:

  • Losing skills they once had (stopped talking, waving or pointing)
  • Not responding to their name
  • Avoiding eye contact and/or wanting to be alone
  • Not pointing at objects to show interest
  • Not wanting to be held or cuddled
  • Speech delay
  • Repeat or echo words/phrases in place of normal language
  • Inability to follow directions
  • Not engaging in pretend play (not “feeding” a doll, etc…)
  • Repeating the same actions over and over again
  • Food aversions/picky eating
  • Struggling to adapt to changes in routine

Again, this is not an exhaustive list. In fact, the reason it’s called Autism Spectrum Disorder is because children can be at any place along the “spectrum” in terms of how their lives are impacted

This is why it’s so important for parents to be on the lookout for any potential red flags. They know their child better than anyone and can help be an advocate on their behalf. Voicing concerns to a pediatrician sooner rather than later is crucial to improving outcomes.

Denial

No one wants to see their child struggling, which is probably one of the reasons why many parents fall into denial when they start to see signs of autism. A sense of helplessness can also contribute to not wanting to acknowledge that a child may need additional support. Either way, it doesn’t help anyone to bury our heads in the sand and ignore the issue.

Dr. Barbera believes that the best thing we can do to help parents overcome their feelings of denial is to offer them hope. Whether a child receives a diagnosis of ASD or not, it is best to explore the reasons behind any developmental delays. When a parent understands that being proactive is beneficial, regardless of the outcome, it can help improve their outlook and perspective.

The Waiting Game

With the number of children diagnosed with ASD rising, the demand for services such as Speech Language Pathology, Occupational Therapy and Applied Behavior Analysis (ABA) Therapy has skyrocketed. As a result, families are facing lengthy waits — 14 months at hospital-based specialty centers, on average — for just an evaluation and/or diagnosis. That’s a long time for a child to be struggling without much guidance or support.

This can be an especially frustrating time for parents too, of course. Many who have been in this situation will describe sleepless nights spent scouring the internet for any resources and information to calm their mind. It’s the helplessness that can leave people feeling so discouraged and defeated.

Using ABA Therapy at Home

Having lived through this experience first-hand after her son, Lucas, was diagnosed with autism as a toddler, Dr. Barbera can relate to the panic, denial and desperation parents might be feeling. As a result, she has made it a personal and professional goal to give families tools that they can use in their everyday lives to help children

Mary Barbera ABA Therapy

Dr. Mary Barbera Initially designed as an online training option for professionals, Dr. Barbera began to notice what she describes as “gung ho” parents attending her speaking engagements. As a result, she expanded her course, Autism ABA Help, to make the lesson plans accessible to caregivers and providers of all backgrounds.

Dr. Barbera offers free online workshops for both parents and professionals including the Stop Waiting and Worrying About Autism, which is designed specifically for parents under 4 who are waiting for a diagnosis or more intensive treatment.

Of course, there is no magic bullet and parents should do their own research before choosing a therapeutic approach for their child, but Dr. Barbera’s hope is that, by giving families the ability to take action sooner, rather than later, it will lead to better outcomes for children.

Can You Turn Things Around?

There is no shortage of controversy when it comes to autism. Whether it’s the debate surrounding the underlying causes, diagnostic criteria or treatment options, everyone has an opinion. Dr. Barbera believes that recovery from autism is possible through early intervention and ABA therapy. 

Dr Mary Barbera

Dr Mary Barbera

While Dr. Barbera explains that no one can predict how a two-year-old with autism will do later in life, she points to the classic study published in 1987 by Dr. Ivor Lovaas which suggests that nearly half of children treated very aggressively with ABA therapy went on to become indistinguishable from their peers.

“Whether the recovery rate is 4% or 47%, it’s not 0 and the earlier you intervene the better,” Barbera says. “My mission with this project is to teach parents how to intervene to help reverse autism symptoms in toddlers showing the earliest signs of the disorder.”

Although, there are those who balk at Dr. Lovaas’ work and feel that attempting to make kids with autism “normal” is discriminatory and potentially damaging, the decision of how to address any ASD symptoms or diagnosis a child may have ultimately lies with the parents or caregivers. It can be reassuring, then, that if you decide to pursue treatment there are options available, such as the course offered by Dr. Barbera, to empower parents to help their children.

Clearly, this discussion will be ongoing in our society for years to come and, in the end, we may never find all of the answers. In the meantime, Dr. Barbera is trying to offer parents a beacon of hope, education and a convenient, affordable option. For those on long waiting lists, her work is a welcome reprieve from the worry

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