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Help for Child with Autism & Recurring Behavioral Crises: Part 2

“Our child – soon to be a teenager – has autism, and there are times when we find ourselves in a true behavioral crisis. What can we do besides call 911?”

So important is this question – and so broad the situations and options – that we invited two experts to offer different perspectives. Last week’s post, by child psychologist Lark Huang-Storms, discussed in-home and out-patient options. Today’s post is by child psychiatrist Matthew Siegel, director of the Developmental Disorders Program at Spring Harbor Hospital, in Westbrooke, Maine. Dr. Siegel heads a newly funded research consortium seeking to advance understanding of severe autism and its treatment. (Read about this new collaborative here.)

Recurrent behavioral crises, be they hourly or weekly, are among the greatest challenges for children and families affected by autism. Whether they occur at home, in school or the grocery store, crisis behaviors keep children from advancing toward their potential.

When they recur, interventions should begin with medical examination for possible underlying conditions, a positive-support behavioral plan and exploration of sensory and communication issues. Next comes careful consideration of behavioral medications. (For a discussion of these issues and options, see last week’s blog post and the Autism Speaks Challenging Behaviors Tool Kit.)

When these options fail, it may be time to consider a more intensive, coordinated intervention program such as psychiatric hospitalization or residential treatment.

What are the red flags that indicate it’s time to consider such intensive help? 

They include:

* Repeated physical aggression

* Frequent, serious self-injury

* A significant change in function (loss of interests, withdrawal from family, etc.)

* Serious and persistent sleep disturbance

* School expulsion and/or an inability to leave the home.

As in all facets of autism care, I urge families to look for expertise when selecting a provider of in-patient or residential treatment. This selection process is your crucial first step to maximizing your child’s progress.

In-patient hospital programs
The most immediate option may be to seek admission to the children’s unit of your local psychiatric hospital. However, one can’t assume it will have providers who are familiar with autism. I highly recommend a pre-admission visit to explore the expertise and programs the hospital provides. If at all possible, don’t wait until your need is acute.  

Ideally, a hospital in your region has a psychiatry unit that specializes in serving children and teens with autism and other developmental disorders. Such specialized units are staffed by multi-disciplinary teams that take a sophisticated approach to the issues underlying crisis behaviors. Their expert assessment becomes the basis for a comprehensive treatment plan – often a combination of behavioral therapy and medication. Stays average around 22 days, after which most children can return home. Such hospital stays are covered by health insurance when there’s a significant risk to safety or an inability to function.

In 2011, my colleagues and I published a survey of hospital autism programs – describing their potential and limitations. (Download the full report here.) While specialized in-patient hospital treatment for autism is relatively scarce, our preliminary research suggests it can be quite effective.

We have also launched a research collaborative of such hospital units to further advance our understanding of serious behavioral disturbance in autism. You can view a complete list of these participating hospital programs here. While insurance coverage varies, many of them accept children from out of state or even internationally.

Residential programs
Unfortunately, in-patient hospital programs for severe autism are still few in number and beyond the reach of too many families. In addition, some children and teens don’t respond to their intensive but limited course of treatment.

For these children, residential treatment is another option. The Autism Speaks Resource Guide can help you find residential schools and adult programs in your area. (Follow the link, and click on your state.)

Like hospital units, residential programs vary widely in their expertise and suitability for addressing the unique challenges of children and teens (or adults) with autism. When considering a residential program, I urge you to ask the following:  

* Does it have a multi-disciplinary team that includes a behavioral specialist, a communication expert and others with expertise in autism? 

* What is its treatment approach and how does the team assess and treat challenging behaviors?

* What evidence-based approaches are used?

* How many children with autism have they served? What is the average length of stay? What is their success rate, and how do they define success?

In my opinion, providers who can provide clear answers to these questions are more likely to be able to help your child. It’s also important for you to feel comfortable with the approaches they describe and use.

In closing, I want to wish the best to you and your child and to the many children and families who share your great need. Please let us know how you’re doing by emailing us at GotQuestions@AutismSpeaks.org.