By: Alycia Halladay, Ph.D., Director of Research, Environmental Health Sciences
As the average age at which early signs and symptoms of autism and diagnosis moves becomes younger and younger, methods for intervening at autism at the earliest possible ages are becoming more widely used. At this year’s IMFAR meeting, several clinicians and researchers addressed differences in design, methods, and identified challenges and potential solutions for delivering intervention from individuals with ASD as young at 10 months of age. Since this is when very early symptoms of ASD can be detected, but not yet diagnosed, many are considering this as a method of prevention rather than intervention. A feasible and cost-efficient way to provide interventions to infants and toddlers is to engage parents and train them to use behavioral techniques to improve development. What works for adolescents and adults does not apply to infants and toddlers. Instead of spending time working on specific tasks and skillsets, clinicians work with parents and provide ongoing support to engage children in social, communication and motor skills during playtime activities. But does this prevent ASD?
The simple answer is that it is very complicated. As reported in an earlier report, one size does not fit all. There may be a number of variables that affect outcome. In addition, last year, a report out of the UK last year reported that parent-mediated interventions did not result in a change in diagnostic status in young children. This same group showed new data at IMFAR this year showing that the intervention was effective in some ways – infants showed increased attention and gestures as well as improved shared interest. These early improvements are thought to lead to a higher level of functioning later on.
Children with ASD suffer from impoverished social interaction, and parents can be instrumental in providing stimuli to their children to change behavior. Most interventions now focus on encouraging parents to actively engage the child using evidence based strategies, in natural environments. Other types of interventions that were used included promoting behaviors and responsiveness in the context of everyday routines.
Given that published research don’t actually prevent ASD, but improve long-term outcomes, is the goal of early interventions to reduce the incidence of ASD? Alice Carter, member of the Autism Speaks Toddler Treatment Network noted that earlier screening and delivery of parent interventions which improve joint attention, and coordinated attention between parent and child – may prevent symptoms down the road, but may not always lead to a change in diagnosis. She stated “working with parents can make a huge difference in many children’s lives.”
Improved outcome measures which are more sensitive to improvements over time on a number of domains need to be developed to better describe these differences. In addition, working with a young child at home is difficult in any situation, and especially for families affected by ASD. Therefore, methods and techniques to maximize the amount of time parents deliver effective interventions are considered a priority. Autism Speaks is proud to sponsor this network in thinking about these important issues.
People with autism spectrum disorders such as autism and Asperger Syndrome can be prone to depression, which may lead to a risk of suicide in some cases. These developmental disorders have a lasting change in a person’s thinking, how they react to certain situations, their work and how they relate to others. People with Asperger’s or autism may face increased stress, greater difficulty with relationships, difficulty managing their own emotions, and often fewer skills for dealing with these problems. Without appropriate support they may find themselves feeling isolated and helpless.
It is important to realize that because of these and other factors, autistic teenagers and adults might experience feelings of depression and may be at greater risk of suicide. For people who think about ending their lives, suicide may represent an answer to what they feel is an otherwise unsolvable problem. The choice may appear preferable to circumstances such as enduring emotional distress or disorder, which the person may fear more than death.
It is particularly important for family members, friends and those who care about the person to know the danger signs, know ways of being helpful and know who you can turn to for advice or referral.
September 5-11 is National Suicide Prevention Week. Although it is very important for all people to focus on their mental health and well-being, it is particularly important for the caretakers of those who have autism. Autism and Asperger’s Syndrome can affect communication abilities, which may complicate seeing the cues of a person in trouble.
Please visit these sites for more information:
National Suicide Prevention Lifeline: http://www.suicidepreventionlifeline.org/
To Write Love on Her Arms: http://www.twloha.com/
Need immediate help? In the U.S., call 1-800-273-8255
This is a guest post by Gene Bensinger. Gene is on the Advisory Committee for the Autism Safety Project, and a parent advocate on issues affecting adults with autism.
November 22, 2005. It was just before Thanksgiving. I was reading the Chicago Tribune when a headline caught my eye: “Autistic Man Dies in Police Struggle.” The incident had taken place just two days earlier in a much sought after group home located in Des Plaines, Illinois, a fairly affluent, safe suburb of Chicago. The article went on to describe one escalation after another as police tried to subdue the young man with autism, first in his house, then in the fenced-in backyard. The police were called to the home after the young man had severely bitten a caregiver who had tried to restrain him, the reason for which we’ll never know. 30-year-old Hansel “Yusuf” Cunningham never made it home to spend time with his family that Thanksgiving that year. I thought to myself, “How in the world could this have happened?”
As the parent of a then 12-year-old son, I had an emerging understanding that my easily redirected child would soon be a physically bigger and much more visible teen. He would experience the effects that “raging hormones” deliver during puberty. He would ultimately live as an adult in a community that might appear to him a hostile environment of loud noises, confusion, and chaos. So I decided to study the issue of autism safety in detail.
I learned that safety isn’t yet the important part of the autism toolkit it needs to be for everyone in our community. Unlike so many other issues, this is one where the autism community shares widespread agreement. Let’s build some bridges and speak with one voice so that all of us can live safer lives.
As I see it, a big reason that problems escalate out of control is that the behaviors we see in the autism community on a regular basis are the exact same behaviors law enforcement, security professionals, first responders, and others like school administrators have been instructed to recognize as potentially uncooperative, hostile, or even threatening. The problem is that the “book” they used for training is wrong. The good news is that many are rewriting their “books” and getting the training they need. But there’s still a huge gap to bridge when you consider the target audience we need to reach is over 2.5 million professionals!
Rather than risk triggering a tragedy like the one highlighted above, we as a community need to teach law enforcement and others who interact with people on the spectrum to recognize some simple, basic markers, use common, easy de-escalation techniques when needed, and call for help and support from trained specialists. But it’s also not fair to put all of the responsibility on others.
I don’t think we’re doing nearly enough in the autism community to safeguard ourselves or those in our care. Everyone needs to understand and work to mitigate the main risks people with autism may face, like wandering, drowning, and becoming easy targets of crime and abuse. These risks are very real and often appear when least expected.
That’s why I am thrilled that Autism Speaks stepped forward to create the Autism Safety Project, a stand alone website that links professionals, individuals with autism, parents, teachers, judges, and others to the tools they need. If you haven’t yet visited the site, please do! Then reach out and make sure the local professionals in your community or on your team receive specialized training. If they haven’t yet, ask them to! My experience has been, after they study the issue, the answer is always, “Yes.”