The future of treatment for autism

I just returned from the 30^th Annual Calaba (California Association for Behavior Analysis) conference. A lot was discussed there about the future of Applied Behavior Analysis services for individuals with autism. One thing we know is that in fact we do not know what the future looks like. July 2012 will be the start point for the bill Gov. Brown signed a few months ago. This bill mandates that Health Insurers must provide ABA services for autism. A number of people and organizations worked very hard for a long time to see this becoming a reality.  However, we cannot say this is the end of the road and we will live happy ever after. Health Insurance companies will not make it easy. And one cannot blame them. Insurance companies are for profit corporations and will still make it difficult to obtain coverage because ABA services are expensive and insurance companies are not in the business of losing money.  

One main obstacle will be that we will need to justify the “medical” need for services, not an easy thing to do in a field that targets learning, social and communication skills. Additionally, we will need to learn the complex rules and protocols of the system. Health Insurance providers are a completely different beast than the School and Regional Center systems we (agencies, professionals, parents) are used to navigate. In the meanwhile funding for services at state agencies continues to decrease. Schools and Regional Centers are state bounded, meaning they are at the mercy of budget cuts. The times when we received more referrals than we can handle are over. And when we get referrals, the fees they pay hardly covers the cost of delivering quality services.

What can we do to smooth the process? Well, a whole lot. For starters we need to learn to work in collaboration with the insurance companies, and not in confrontation. If they do not like us, it will be very difficult to enter their networks. Customer Service is the key, and they are the customers. Agencies have to understand new procedures, from the contractual process to billing. And clinicians need to provide high quality services. No more babysitting the kids, or magic interventions that promise results based only on hopes and good intentions. We should deliver scientific evidence proven, data based effective interventions. That is why the bill is clear: Applied Behavior Analysis is the intervention for autism. No more services “forever”. Goals have to be clear. And we have to achieve them. Intervention programs need to have an exit strategy. No more requesting continuation of services even when the client is not showing progress. If we would sell cars, it would have to be a Mercedes Benz; less than that is not enough anymore.

And parents should be savvy and fight for the services their children need. And be ready for co-payments and deductibles. The idea of receiving free services might be over. This is not different than when we visit our physician or need surgery.

Willingness and commitment to learn, involvement, responsible conduct, business oriented customer service will be required. It will be a team effort. It has to be because there is a lot at stake.

Daniel Adatto, BCBA.

Coping with the autism diagnosis

I recently read an article one mother published in which she describes the day she received the news that her son had autism, some 15 years ago. The doctors spent two hours poking and prodding and measuring her son. She recalled waiting to hear what the doctor would say, fully expecting him to tell her how adorable her child was when instead, he matter-of-factly told her “Don’t expect higher education for you son. He has autism.” She left the office and looked around, wondering if everyone was looking at her knowing she had just received life-altering news. “It felt as if we were looking down a dark and endless tunnel”, she wrote.

Fortunately, autism awareness has come a long way since then. While it may still be earth-shattering to receive this news, parents now leave a doctor’s office armed with information and a clear plan of action on how to take the first steps in the long journey of securing appropriate services to help your child – information formulated on the basis of scientific research on the causes and best treatment  practices for autism.

While many of our readers are parents who have been dealing with the trials and tribulations of autism for many years, we have many newbies who may have just received the diagnosis and are desperately seeking advice or information. So we’d like to take this opportunity to open up the blog to comments by asking our more experienced parents to post a response to the following question: If you could go back in time, what would you tell your old self who just received the news that your child has been diagnosed with autism?

The following are some of the wonderful comments that were recently posted on a similar Autism Speaks blog.

“Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.”

“I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter.”

“Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO!”

“As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child.  Watch them, study them, and learn what works and what doesn’t.  Then help those around them to understand.”

“Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child. Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths.  Always keep looking forward. Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them.  He/she will bring so much joy to your life – more than you can imagine.”

“The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep your hope alive!!”

“Don’t fear the label.  The “diagnosis” will help you get the early intervention services that will change your world later on.  Don’t get hung up on the milestones your child is not meeting and find joy in your child each day.

There is a light at the end of the tunnel even though you cannot see it now. Trust us.

Daniel Adatto, BCBA. 

Stress Management

The TV show “60 minutes” presented a segment the other day about some monks living in a monastery at the top of a hill on a Mediterranean island. They hardly speak, consistently follow a scheduled routine, pray and are stress free. Great! I finally found the solution, I thought. While I was packing my suitcases the commentator described the specifics of their lives. At one point he explained “they have no contact with the outside world, no phones, no internet, NO TV”. What? NO TV? No way, I’m not going. I’d rather live a stressful life than give up on TV. After all, without TV, how would I have learned about the monks?

After I caught my breath again, I remembered a parenting class about stress management that I used to teach. Perhaps monk-hood isn't the only option after all. 

One cannot expect a stress free life. Work, kids, paying the bills, health, traffic, you name it. The secret of happy people (yes, there are happy people somewhere out there, that was another “60 Minutes”) lies in managing your stress.  And this is especially relevant when you are a parent. Nervous parents create nervous children. When a parent is tense, children pick up on that tension and it is reflected back in their behaviors. When parents can learn to relax, it can have a profound effect on their children. We often think that to be a good parent we have to focus all our attention and energy on our kids. Yet experts say that taking time for ourselves is one of the best things we can do for our families.

Being a parent is one of the most difficult and demanding jobs. Yet, nobody teaches us how to be a parent. Being able to relax and enjoy the moment is paramount in being a more effective parent. Learn to relax and it can change the whole tone of your household.

If you don’t acknowledge and deal with your stress, it can lead to anxiety, depression, ulcers, emotional breakdown, and deterioration of relationships, addictions, sleeping and eating problems, which in turn will increase the stress level causing a snow ball effect.

Again, stress cannot be eliminated but it can be managed. Keep in mind that you not only have to manage your stress, but your children’s stress too.  

I learnt to take breaks to relax and recharge my batteries. Yes, taking breaks is a skill we should master. I take small breaks (10 to 15 minutes) between activities usually every 2-3 hours throughout my day, in particular before and after “stressful” events, such as a difficult meeting at work, or after being at the dentist. Even if I only have a few minutes to spare I take advantage of those minutes by sitting down, sipping a cup of coffee or tea, having a little walk at the park, clearing my head and taking deep breaths.

I also take medium breaks (1 to 2 hours). I take these breaks at least once a day even if it is just relaxing in front of the TV or with a good book after the kids went to sleep. I love large breaks: Imaging an entire day for yourself! I take these breaks at least 2-3 times per month, preferably, once a week. And finally, I’m crazy about extra-large breaks: 3 to 5 days minimum. Plan a VACATION! You deserve it.

What can you do during those breaks? Make a list of relaxing activities that you enjoy. If you put it in writing, you are more likely to actually take the time to enjoy your breaks.

The only way to ensure that you will get needed breaks is to schedule these breaks in advance. If you wait until you have time it will never happen – something will always come up. You don’t wait until your car runs out of gas to stop and fill the tank. Don’t you deserve at least the same treatment than your car?

Do not try to do it all by yourself. Delegate and seek appropriate support and professional help when necessary. And learn to say “NO”, Do not overextend yourself.  

Important: “NOT TO DO” lists: Eliminate the clutter in your mind and in your environment. Too much “stuff” in your head and around you takes away your energy. Decide what you are going to stop doing and keep a separate list to remind yourself. For example, schedule specific times to read and answer emails, and let the voice mail answer your calls. If you jump to your email as soon as you hear “You’ve Got Mail”, you’ll never finish anything. When tasks “not done yet” accumulate it can be very stressful.

Attention: Expecting your hungry kids to wait until you to finish your call it’s a sure disaster. Make your calls when they are hypnotized in front of the TV or playing with Daddy. 

If all of the above is not enough, seek professional help through your primary physician, local social services agencies, hospitals or religious/community centers. Don’t wait until is too late. 

The manner in which you manage your stress greatly influences your children’s level of stress, which in turn prevents behavioral problems. Learning to relax can change the entire nature of your family dynamic.

Or move with the monks.

Daniel Adatto, MA, BCBA

A Day Off From Autism

My wife recently told me about a mom she follows on Twitter who posted a tweet the other day asking God if her 11-year old son could please have a day off from his life with Asperger’s Syndrome, and while he was at it, could she too. It got me wondering how many other moms would love a day off; a day off from being a mom of a child with a special need. And, why not, a day off from being a mom.  Parenting is a blessing, but it is stressful. I don’t think there is anyone who would disagree. We all could use some time to just be ourselves, to not have someone else dependent on us, to not be needed for a little while, to have the freedom to complete a task without being interrupted. I could go on and on but I think you get the idea. 

When a family has a child with autism, there are even more unique stressors. Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities or other special needs. A child with autism may not be able to express love, making it more difficult for parents, because that moment when we see our child happy, when she gives us a hug and a kiss, is when we replenish our batteries.  Children with autism may not even be able to express their basic needs, leaving parents to guess why their child is crying. Is she thirsty? Hungry? Does something hurt? When parents cannot determine their child's needs, both parent and child are left feeling frustrated. A child’s frustration leads to behavior problems and then we’ve entered a vicious cycle, adding even more stress to the parent.

Other reasons for increased stress for families with a child with autism can include feelings of isolation, fear of reactions from society, feelings of grief or inadequacy, concerns over finances and what the future holds, and the challenges of navigating through the system of services.

While unfortunately we can’t give our children a day off from their disorder, we can provide them with an environment where they can feel a sense of belonging, understanding and acceptance by, for example, attending events for children with autism and their families, such as organized play-dates, parents support groups, parent trainings, conferences, etc. These events are not only good for the child, but they are a wonderful experience for parents. It provides comfort to know that you are not the only one experiencing a particularly stressful situation. In addition, parents can get the most useful advice from others facing similar challenges and using similar services and supports.

Don’t isolate yourself, get informed, learn the system, and don’t forget to take care of yourself. Yes, first.

Coming up: “Stress Management.” Don’t  miss it.

Daniel Adatto, BCBA

To Spank or Not to Spank

I may just be the only remaining person who still reads the paper version of the LA Times. But regardless of the state of the publishing industry, they still produce good content. What sparked my attention most recently is their article about the pros and cons of spanking. To read the full article click here http://www.latimes.com/health/la-he-spanking-pro-con-20111226,0,5993621.story

The LA Times cited that while corporal punishment in the home has been banned in 31 countries, no such prohibition exists in the United States. However, it is opposed by the American Academy of Pediatrics and the American Psychological Association, for good reason in my opinion.

I think every parent experiences those moments when we would like to implement some discipline techniques with our kids that are mostly illegal (even in the United States), but we refrain from doing so for obvious reasons. Not so obvious?

Well, we (parents, educators, therapists, etc.) should be in the business of building positive and socially desired behavioral repertoires. In plain English, we should teach our kids to be good people. Spanking only teaches aggression. When you spank, the message goes something like this: “If you have a problem, the solution is aggression.”

The author of the article said it well when she wrote “Just imagine that someone twice or three times as big as you starts hitting you — that's the way kids describe it.”

If you are still not convinced and decide to go ahead and spank anyway, I only ask that you don’t complain when your child hits you or others. So the next obvious question I hear you asking is “If spanking is a no-no, what can I do instead?”

The LA Times’ article offers a couple of ideas, such as explaining what the child is doing wrong, or removing your child from the situation. I like both strategies, especially the second one because when your child is acting out is probably not a good time for reasoning.

In the article Professor Larzelere proposes understanding your child, making sure your child understands the expectations, using reasoning and nonphysical consequences, such as time out and taking away privileges. “But if the child won’t cooperate, some kids need something more forceful to back it up. This is where back up spanking comes in.” Raise your hand if you feel like spanking professor Larzelere.  

I couldn’t help but wonder why there is little or no mention to positive methods of discipline that would teach and foster positive parent-child interactions. Here are some of the strategies I teach the parents I work with that have shown great results:

• Reward your child for good behaviors, such as compliance with directions.  Motivating is a much more effective strategy than forcing. Always provide praise for good behaviors. As parents we focus too much on scolding or punishing our kids for bad behavior but we forget to reward the good ones. Catch them being good.
• Provide your child with positive attention before he/she needs to act-out to get it.
• Teach your child appropriate ways to obtain attention.
• Ignore a bad behavior, which means not giving in to child’s requests or giving up on directions because your child is misbehaving. Do not ignore good behaviors.
• If your child is acting-out, try distracting him/her with humor, act silly or change the topic of conversation to something your child is looking forward to, such as a weekend trip to Grandma’s. Redirecting your child’s focus of attention is sometimes enough to calm the storm.
• Teach your child problem solving skills. Do not expect them to behave well out of the blue sky.
• Teach your child how to appropriately ask for help.
• Provide your child with consistent daily routines, including opportunities for physical activities and play.
• The most important, and probably the most difficult, thing a parent should do during a tantrum is to remain calm. I cannot stress this enough. Children are like little sponges that absorb your anxiety. If you lose control while the child is throwing a tantrum, expect it to feed the tantrum.

Fostering loving and nurturing relations, teaching self-control, rewarding the good while ignoring the bad, teaching instead of policing. Sound impossible? In that case, get a pet; children might not be a good option for you. Already have kids? Consult with a good behaviorist.

Daniel Adatto, BCBA

An Epidemic of Disease or of Diagnosis?

Kudos to the LA Times for addressing such an important topic in its series of articles “Discovering Autism”. The first one was published on December 11^th 2011 under the intriguing title of “Unraveling an Epidemic.” (See: http://www.latimes.com/news/local/autism/la-me-autism-day-one-html,0,1218038.htmlstory)

Recent data shows that cases of autism have increased twenty-fold (yes, 20) in the last thirty years. This has caused many to question whether or not we are dealing with an epidemic.  Until recently, conclusions were drawn that this increase was due to very different reasons, such as environmental toxins, or “refrigerator mothers”. However, what is becoming increasingly clear, and what the article addresses, is that in fact there is more a surge in diagnosis rather than in disease.

I tend to agree with the explanation that the explosion in cases being diagnosed is due to more social and cultural awareness, meaning a broader concept of the condition and harder looking for it. The LA Times covers this in their article:

“Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves. Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away. The reason, this analysis suggested, was simple: People talk. Autism is not contagious, but the diagnosis is.”

“Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good. If it's going to improve the possibility of getting services that will be helpful, I will give the label,” she said.”

“Roy Richard Grinker, an anthropologist at George Washington University who has studied autism around the globe, said that what some call an epidemic is really an “epidemic of discovery. Once we are primed to see something, we see it and wonder how we could have never seen it before,” he said.”

This is actually a good thing because with this diagnosis, families can obtain services that were not available to them 20 years ago. Those of us of a certain age clearly remember that kids displaying symptoms that we now know fall under the spectrum of Autism disorders, were diagnosed with Mental Retardation or Psychosis, and usually heavily medicated and relegated to an isolated room in the house, or worse, institutionalized for life.

“The view of autism as invariably severe and lifelong still prevailed in 1980, when it was first listed in the Diagnostic and Statistical Manual of Mental Disorders, the bible of U.S. psychiatry”, per LA Times’ article.

A diagnosis that used to be stigmatizing, frightening and paralyzing is preferential now. Parents even go to court to obtain the diagnosis because they know that with this “label”, they will have access to state funded services they couldn’t otherwise afford.

“Most experts see wider diagnosis — and increased spending — as progress. Children who in the past would have been overlooked, misunderstood or deemed hopeless cases are receiving help.”

Truth be told, nobody knows what causes Autism. One day we’ll get there, maybe. In the meanwhile, parents need to be knowledgeable and proactive in getting their child necessary and effective help; and we, professionals, should get extensive and ongoing training in evidence-based treatments that are effective. I emphasize effective because every waking moment of these children’s lives is precious. There is no time to waste on non-scientific and ineffective approaches.  

“Of all the advice Laurie Bailey received when she began seeing signs of autism in her son, Benjamin, now 8, one piece proved the most valuable. “If you embrace that word” — autism — “you will get far more services,” a friend told her.”

The second article of the series, “Warrior parents fare best in securing autism services”, published on 12/13/11 (http://www.latimes.com/news/local/autism/la-me-autism-day-two-html,0,3900437.htmlstory), expands on this:

“In both the developmental system and the schools, the process for determining what services a disabled child receives is in essence a negotiation with the parents. The financial squeeze on school and state budgets has turned up the temperature, leaving officials caught between legal mandates to help autistic children and pressure to curb spending.”

“Part of what you're seeing here is the more educated and sophisticated you are, the louder you scream and the more you ask for,” said Soryl Markowitz, an autism specialist at the Westside Regional Center, which arranges state-funded services in West Los Angeles for people with developmental disabilities.”

Every parent should learn from these examples! It’s about getting educated, increasing awareness, embracing the diagnosis, and ultimately getting help. Let’s join hands in our crusade to assist these beautiful souls become the happy and productive human beings that will contribute to a better society and everybody wins.

Daniel Adatto, BCBA

Holidays and Autism

Holidays typically are a time of great joy, sharing and spending time with family and friends. However, for those of us with family members who have special needs, the holidays can present unique challenges. What is perceived as joyous to most of us can often be overwhelming to someone with autism. Holidays cultivate many stressors that may cause a child to erupt: absence of routine, overstimulation, being away from home, and one important one that many of us may overlook – parents’ stress.   Kids are very tuned into their parents mood and when they sense you are stressed, they can get extremely overwhelmed. They need you to stay grounded and when you aren’t, their behavior may show it.

Being sensitive to your child’s needs and keeping familiar routines in place are the best ways to avoid holiday havoc. Here are some helpful tips to help keep parents sane during the holidays. 

Prepare, Prepare, Prepare.

Prepare your child for the social event: Explain to your child what is going to happen when there are changes in routines ahead of time. Be specific about every detail that might occur in any given situation. If part of your holiday itinerary includes airport travel, prepare your child for the crowds he might encounter and explain him about security procedures. Be sure to include the fact that he might be asked to remove his shoes, walk through a “funny machine” and that someone might look through his things. New or unexpected situations can be very frightening for a child with autism and being prepared can help him cope. It may be helpful to create a picture book that will show the sequence of events and prepare him for the sights, sounds and people he might encounter.

Prepare the social event for your child:

Avoid long trips whenever possible. Airports, planes and long car rides could be very stressful.

Stick to your normal routine as much as possible. Keep sleep and meal/snack times as close to their usual time as possible.

Bring your child’s favorite foods with you. Unfamiliar foods will leave your child starving, which is literally a recipe for disaster.

Bring your child’s favorite movie, video game system, sensory and security toys. Having familiar items will give him a sense of normalcy and comfort.

Pre arrange for a quiet space for your child to retreat to when stimulus gets too intense and he needs a break.

Don’t give in to social expectations (“People are looking at us”) or worry about insulting your host or family members if you don’t abide by social norms. You are your child’s advocate, not the world’s. This means you don’t need to force your child to hug, kiss, shake hands or play games with anyone if they don’t want to. Try to motivate him instead. This goes for clothing as well. Don’t force your child to wear something or comb his hair if he really doesn’t want to. You have to pick your battles. In general terms, don’t force your child to do anything unless it involves a safety concern or an emergency.

Educate your family ahead of time if you feel necessary. You can explain to them possible behaviors that might occur so that you don’t find yourself constantly apologizing for your child’s behavior.

Know the triggers and read the precursors of challenging behaviors, such as facial expressions, changes in breathing, body movements, etc. Look for the signs that your child may be unraveling and retreat to your safe place. Preventing a meltdown is always easier than managing a tantrum once it begins.

Finally, relax and enjoy. You are your child’s barometer and if you are stressed out, he will be too.