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