Focus on behaviors, not on disorders
May 15, 2009
Can applied behavior analysis work for more than autism spectrum disorders?
What has ABA done for my child
May 5, 2009
I remember the day I received the letter in the mail and as I read through the pages of information not understanding the majority of it only to get to last paragraph and reading the summary and seeing the word autism. Who knew that one word would not only change my life but the lives of our entire family forever. In the beginning I heard people say he doesn’t look autistic, no he can’t be autistic he can talk, no it must just be bad parenting. The comments went on but never stopped me from working to help my son.
I struggled with the realization that there is not a road map, what to do next manual for parents whose child has just been diagnosed with autism, who knew a child needed to come with a manual. I spent months researching the internet and speaking with other parents. I finally was able to obtain the assistance of a BCBA, who started working with my son we saw great improvements but being a military family we had to move and we lost our ABA services. After being stationed in the mid-west for three years were services were not available we then moved to Pennsylvania where we found a wonderful BCBA for our son. Paul Eschbach, who is the President of Autism Services North. Paul has changed not only the life of my child but our entire family. I can now take my child to Wal-mart and we can shop for an extended period of time, we can enjoy family outings and have family dinners without the melt- downs that used to rear their ugly head whenever we left the home. This has not been an easy road, the therapy can be intrusive, having someone come in your home 1 to 2 days a week cause dinner schedules to be interrupted and social gathers are scheduled around therapy. But I wouldn’t do anything differently. My son is reading on a 1st grade level now when we moved here he was on a less than pre school level, math is up as well, he is now doing multiplication tables. I am so proud of the progress my son continues to make each day that he surpasses goals it makes it all worth it. ABA is not a cure but it’s as close to one as we are going to get right now.
If you are considering ABA therapy for your child just remember it can be intrusive having someone in your home suggesting how to work with your child. You have to follow through with the program; you must retrain yourself, throwing some old parenting ideas out. This can be hard believe me I know I have been doing this a long time and I still mess up, forget but as long as you keep trying it will work.
I suggest you meet with and interview a couple of BCBAs and decide who is a best fit for your child and family. Make a list of what you want to see for your child whether its social skills, education, behaviors, or other skills that you want your child do correctly.
Make sure the schedule fits and remember the more flexible you are the better your opportunities for the provider you want to work with your child is available.
If you still have questions or concerns you can email me directly at lisa@autismservicesnorth.com or call me at 1-800-306-8602
I wish you the best on your journey through the world of autism.
Lisa Gibbner
Parent of Charlie age 9
Director of Operations
Autism Services North
Web Site Resource
December 19, 2008
This site was recommended by a coworker and I thought it was worth bringing to your attention. It has a lot of behavior analytic ‘friendly’ stuff to educate and use. I’m assuming it’s a non-profit because of the .org in their name. Anyway, here’s the sight http://behaviordoctor.org/formsandtools.htm
10 “ASD tips” from parent of ASD child
April 3, 2008
According to the CDC, autism affects 1 in 150 children, with boys four times more likely than girls to be held hostage by this epidemic. Signs of autism can be seen at ages as early as six to eight months. For Brian and me, the autistic behaviors of Jack, our now six year old son, first appeared at age 10 months. I was pregnant with Ellie at the time and busy teaching that the University of Maryland, so I passed them off as just interesting, if not quirky, behaviors. Shortly before Brian deployed to Fallujah in August 2003, we met with a physician’s assistant who listened to us about our questions regarding Jack’s lack of language. Going through the referral process was tedious and B was commanding in Fallujah, so communication across six time zones proved challenging. Nearly one year later, we finally received the diagnosis that I had feared: Jack was autistic.
Since that time, we have tenaciously pursued treatment (since there is no cure). While at the War College in Carlisle, PA, we have found what appears to be the best of every part of the situation: an autism ABA school in Hershey, medical oversight and treatment at the Kennedy Krieger Institute’s Center for Autism and Related Disorders (CARD) at Johns Hopkins in Baltimore, and home therapy through the Army’s supplemental insurance (ECHO through TriCare). We estimate that Jack receives nearly 40 hours a week of ABA therapy and instruction, courtesy of the South Middleton School District, the state of Pennsylvania and the United States Army. Taking both a biomedical approach and an Applied Behavioral Analysis (ABA) approach, Jack has made huge strides toward mainstreaming next year at Fort Bragg (where Brian will be commanding the 508th Parachute Infantry Regiment, aka the 4th Brigade Combat Team of the 82nd Airborne Division).
Autism lives daily in our house. Our daughter, Ellie, age 5, has been affected as has our lifestyle. We have learned to embrace routine (a challenge for people like Brian and me) and we have discovered that autism can actually bring some wonderful things to our family. Because of this disorder, we now are acutely aware of our own spectrum-like behaviors (does anyone remember when I only ate Rice Krispies???? if not, remember when I used to exercise three hours a day?) and we are finding joy in our journey.
After five years of ups and downs on the autism rollercoaster, we are still discovering new and interesting twists to this experience. For example, Jack provides us with an interesting behavior every week and it changes from week to week. Last week, it was an aversion to bath time (something that he has always loved) to this week, it is an aversion to public bathrooms. He has come to love his snowboarder hat. . . .which should be interesting as we return to the heat of the south. He loves his pajamas and will sneak away, at the first opportunity, to slip into them. . . .and, they have to be the right ones. . .anything less, and they are left behind.
His food interests vary from week to week, but his love of Lime Tostitos is unabated, even after four years of consumption. He can tell the difference between Pizza Hut thin and crispy pizza edges and those of Papa Johns’. And. . . . unless you want to see unhappiness, do not try to substitute Red Delicious Apples for his favorite, Granny Smith green apples.
He can sing the score to any Disney movie and absolutely loves to watch Rudolph the Red-Nosed Reindeer on any day of the year. . .even when mom messes up and leaves the spanish version in the DVR (Rudolph speaks espanol, but sings in English). You get used to it.
His memory is photographic and his problem-solving skills are legendary. He has learned to eat at McDonalds, Red Robin, Friendly’s and can shop as well as his mother. Branding (my forte) works with this population. . .he can walk through Giant or the commissary and find his exact brands and what he wants without any help. He also loves animals to such a degree, that I often find a giraffe, a lion or Curious George asleep next me when he crawls into bed in the middle of the night with us.
While his social skills may not be great, his love for his sister and her activities is evident. He loves to make her laugh and he is not above torturing her by taking whatever she is pursuing and holding it over her head. He is also very good at getting her to do his bidding. . . .this winter, he found a way to get Ellie to pull him on his sled around the yard. He attached his sled to the back of her electric car and off they went. Ellie is pretty sure that, since he tends to be nonverbal, that whatever she wants is what he wants, but we have finally figured out that they can both manipulate us like experts.
Autism touches all of us. . . through our children, grandchildren or the children of our friends. It is time to take action to combat this scourge that is stealing the minds of our children. If you or someone you know has a child with autism, here are some tips from a family that has been traveling the path for the last five years:
1. Get a diagnosis. Don’t hide your head in the sand and think that it couldn’t happen to you. If it is there, then the best thing to do for your child is to start intervention. An intervention can be a diet change, a medicine (we use Abilify), Floortime, TEACCH, or ABA (all forms of behavioral therapies). If your doctor hedges on giving you a referral to a developmental pediatrician (sort of a coach for the whole team), then change doctors. Don’t wait. The American Pediatrics Association has now stated that all children should be tested at least twice before the age of 2. Be prepared, however, to wait a long time (six to eight months) for access to a developmental pediatrician.
2. Learn what testing looks like. There will be tests for language, gross motor skills, fine motor skills. Ask for clarification. . . if you like statistics, be sure to ask for the z-scores relative to the mean for children at that age. . . .minus 1, 2, or 3 standard deviations below the mean indicate a developmental delay. You can also get the scores in age equivalent scores. . . .for example, when Jack was 3 years old, his expressive language (what he can say) was about 18 months old, his receptive language (what he understood) was a bit older. A good evaluator will not tell you one way or the other (leave that interpretation to the development peds people), but he/she should be able to tell you what they are testing (fine motor skills, gross motor skills, et cetera). Keep a record of every medical test, every psychological evaluation, every meeting. This will help you “cut to the chase” when you meet a new provider.
3. Subscribe to www.Autismspeaks.org. They provide great information and a place to begin. When Jack was first diagnosed, I spent hours, days, weeks and, seemingly, months searching for information that would provide insight into programming (oh, and learn the language that the experts speak. . .it makes it much easier. . .I built a glossary as I learned the vernacular of the world of autism) and how to develop something for Jack. www.Austismspeaks.org has a 100 day kit for families which have just received a diagnosis. While you feel like your world is falling apart, this kit allows you to refocus and start the long journey of raising your very special child.
4. Develop a objectives that will give you a set of goals. We went with a three-pronged strategy. Our goal was kindergarten by age six (we will meet this milestone), potty-training (with the huge help of his preschool aide and teachers in NY) and a renewal of language skills. We expected to achieve this through the efforts of the medical profession, the educational system, and our own home environment. It took fighting with the medical professionals over the course of three years before we felt like we gained any ground (their opinion was that it wasn’t their problem). The schools have been comparatively easy, but as we approach attending a public school, we expect that the road will be rockier. As for our home, we have, with difficulty, become what I refer to as an ABA home. We have changed the way in which we communicate with each other, with our children and with the outside world.
5. Learn your rights as a parent. We, as citizens of the United States, are guaranteed a federally-mandated free and appropriate education. Unfortunately, what looks like “appropriate” to your basic public educational system may not be appropriate for your child. Understand what advocacy looks like, how you can ask for advocates to work with you, how laws and interpretations differ from state to state (we have now learned how to deal with autism in three different states over the course of four years). A great website that offers great information is www.wrightslaw.org.
6. Work at understanding how to match challenges with appropriate services. It is not enough for an IEP to be developed, it must also be appropriately implemented and maintained. It must be updated and renewed. If you don’t feel like your child is receiving the appropriate implementation, ask for a meeting. You not only have to learn what the issues your child is facing, but you have to understand what types of services will help you to meet them and then what types of providers are appropriate to deliver the services. At Hopkins, we have a team of about 7 professionals: a psychiatrist, an occupational therapist, a developmental pediatrician, a pediatric gastroenterologist, a developmental psychologist, a speech and language pathologist, a social worker, an internist. At school, we have a behavioral coordinator, a program coordinator, three behavioral technicians, a speech and language pathologist, an occupational therapist, a music therapist, a classroom teacher, and a classroom supervisor. At home, we have trained respite care givers, a behavioral therapist (a BCBA-credentialed professional) and a behavioral technician from Vista (the school Jack attends is The Vista School in Hershey, PA). We use three different curricula: The Complete Learning Model by Victoria Tucci, ABLLS (out of California) and PECS, as well as an assistant technology speech device.
7. Don’t hide in your house. Your child needs socialization and you can provide that through interacting with the world. Know your child’s strengths and weaknesses and work diligently to provide the best environment for him or her. Get a tougher skin when people give you the hairy eyeball. You would be surprised how much people will respond favorably when you just let them know what is going on in the situation. My favorite reply is to just smile and say “Autism. . .the gift that just keeps on giving”. If they can’t be compassionate to your situation, then you really didn’t have much to say to them in the first place. At least once a week, our behavioral technician goes with us on a community outing (Jack also has this as part of his program at Vista). We have used this method to go grocery shopping, shopping at stores and malls, events (we just went to the Cherry Blossom Festival in Washington DC this past weekend), and to attend Mass.
8. Don’t let autism rule your lives. Remember your relationships with your friends, your spouse, your other children and your extended family members. As I have been reminded over and over again, no one wants to be married to a martyr. It is just too much work.
9. Remember to find time to take care of you. It is not wrong to read a book about something other than autism or to spend the day watching reruns of Law and Order. As we have all heard over and over again, you can’t take care of anyone else until you take care of yourself.
10. Try to find joy in the journey. There are days when we all wish we were as happy as Jack. We lapse into Jack speak. . . . we watch Ellie try to provide ABA therapy by taking away his toys and then making him “ask” for them back. And, most of the time, we just take it day to day.
Feel free to share this with people you might know who might be hesitant to get a diagnosis or whose pediatrician tells them that “he will grow out of it”. Early intervention is the key to success in dealing with autism.
Leslie Drinkwine PhD