Tag Archives: aba

Cruisin’ with autism

19 Jan

Almost exactly 3 years ago I embarked (literally) on an adventure with one of the families I worked with at the time. The family paid for me to go on vacation with them, so that I could work with their son. He has autism and I was one of his in-home ABA therapists, so the family thought it would be helpful to have me around for their international vacation. They paid for all of my travel expenses, and they also paid me for my time. It was a really unique experience, and I’m glad I did it.

We took an 8 day Disney cruise to various parts of Mexico, and during my time on the ship I worked almost 12 hours a day with their little guy. We had some 1:1 time in the cabin to do our regular ABA tasks, and then most of the day I would facilitate his participation in the various kids club activities, and I would also join the family at all of their meals. We worked on lots of things like:

  • Behaviors- managing his self-stimulation, aggression, and non-compliance
  • Meal time- sitting appropriately, waiting, trying new foods
  • Socialization- following what the group was doing, interacting with other kids, responding to family members
  • Language- requesting, labeling, lengthening sentences, varying his phrases
  • Academics- Counting, reading, and completing worksheets

Another important purpose for me joining the family was to work with the parents. We worked on things like:

  • How to elicit more language (withholding items until he asked for them)
  • How to reinforce appropriate behaviors (token systems, praise, access to the iPad, etc)
  • How to decrease maladaptive behaviors (extinction, follow through, etc)

While it was an exhausting experience, and it didn’t go exactly as I had expected, it was a really neat way to do my job…..on a cruise-ship! A few weeks after the trip, we had a team meeting and the boy’s mom told everyone how my presence helped decrease her anxiety and helped her enjoy her family vacation a little more. Plus she was still beaming about the progress he had made on our trip (learning to swim with me, and eating several bites of new foods for me). That right there was my validation. I got to make a difference for this family on their vacation. Plus, I not only got to travel to Mexico for free…but I got paid to do it!! It was really neat, and I’ll always treasure the experience. I think the idea of being a traveling ABA therapist is so cool and I count myself very lucky to have gone on the trip with them.

CruisePics

So… I’m sharing this story because I recently learned of an organization that does this sort of thing. Autism Adventure Travel matches up families with special needs children with specialists who would be willing to join them on vacation. The specialists (Occupational Therapists, Speech Therapists, ABA therapists,  Psychologists and more) volunteer their time, in exchange for a free vacation. Autism Adventure Travel (AAT) arranges 3-8 days cruises, including group vacations, and charges families a nominal fee to find the right specialist. AAT not only makes arrangements for the specialist, but they also put together on-board activities, book group excursions on behalf of the families, and plan the entire vacation itinerary!  They provide full service travel planning, with the added bonus of finding “degreed, background checked, and […] experienced” therapists who are willing to volunteer their time for the families. In addition, AAT fundraises in order to help the therapists get to the ship ports so that the families are only responsible for paying the actual cruise expenses. And, this organization is awesome for therapists who would like to travel the world at no cost. Sure, they have to work on the cruise (just like I did), but it’s an opportunity to utilize their skills in a unique setting.

Autism Adventure Travel provides a wonderful service to families who might otherwise not be able to vacation with their special needs child. And they provide a rare opportunity for specialists to travel for free. For more information you can check out their website here.

 

***I was not asked or otherwise encouraged to endorse AAT. The views expressed are my own.

Perspective

23 Nov

Something happened yesterday that so beautifully exemplifies this Thanksgiving season…

To give you a little background, I work with a family who has 3 children with Autism; a 15 year old, a 13 year old, and an 8 year old. One of them is so self-injurious his head has permanent bruises and welts from where he punches himself in the temples. His knuckles are constantly scabbed. He hurts himself probably at least 400 times per day (and that’s a conservative estimate). He also frequently undresses to poop and pee all around the house. His sisters roam the house, humming and slapping things. Not any of them speak. They communicate through crying, pointing, grabbing, and one of the kids uses some sign language. Their refrigerator has a chain and lock on it, to prevent the kids from over-eating. Their bathroom remains locked to prevent the kids from showering non-stop. Their front door to the mobile home they live in remains locked with a key to prevent elopement. Some of their furniture is broken because of one of the kids slamming his body into it during a tantrum.

This is their life….everyday. 3 Autistic kids, each with very severe disabilities in communication; each with very severe  behaviors.

So, while I was there yesterday, the mother said something to me that really made an impression…

She said, “I see the kids at their school. They are in wheelchairs, and with walkers. I feel so sad for them. They can’t run and play. Some people feel bad for my kids, but they can play with toys and they can run around. But those kids, I feel bad for them.”

What an incredible perspective. This mom of 3 displays no pity for herself or her circumstances. She finds joy in her children’s abilities, rather than despair in their disabilities. She may or may not know how many people feel sad for her, because of her lot in life, but she chooses to find joy in her circumstances, and instead offer her sympathy for those with physically disabled children. This mom inspires me. She has an incredible perspective on life.

lincoln

Graduation

28 Sep

Last week one of my little learners “graduated” from our program. His developmental delays are no longer significant enough to qualify him for our services. It’s always bittersweet when termination happens for this reason, because we’re excited for the child’s progress and growth, but we’re sad we won’t be working with them anymore.

His mom sent me home with a bag of materials we had used with her son, that she figured we could get more use out of. Flashcards, Mr. Potato Head, books…she kindly donated these to me so I could use them with other kids. And inside I also found what I could consider to be the most clever and adorable card I’ve ever received from a parent. (Stickers and stamps compliments of the little guy.)  😉

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I’ll treasure it forever 🙂

7 years

18 Sep

This past September 11th marked my 7th year working in behavior analysis. 7 years ago I got a job as a behavior therapist, as a part-time gig. I started with just 9 hours a week, school shadowing a little guy in a Jewish Temple. Then my client list grew, and so did my passion for the job.

And here I am now….certified, and in a Supervisory role overseeing teams of interventionists and dozens of clients. My company recently published my bio on their website, and it seems fitting to share it, as I celebrate my 7th anniversary in ABA.

BioPic

I didn’t set out to make this my life-long career. It started as something I could do that would help me learn more about the kind of therapy my brother was receiving. Then it blossomed into much more. It became my purpose to learn all I could in order to help my brother, and kids like him.

So, here’s to another 7 years, and hoping I learn even more to help those around me.

Myth #2

5 Aug

Another theme I keep reading about from those who hate ABA is that it produces overly compliant people who are subject to all kinds of victimization because they have not been taught to say “no”. It “strips” people of their voice by insisting on compliance.

First, I’d like to say that where I work it is almost 100% guaranteed that my learners will have a refusal language goal. (The main exception to this is when the child already has a refusal language repertoire). In other words, one of the first things we work on with most of our learners is saying “no” or “stop” or “all done”. And when first targeting this goal, these requests are put on a Fixed Ratio 1 schedule of reinforcement (ie: they are reinforced every time).

Now, once this skill emerges we shift the reinforcement to something more variable. The child no longer gets to be “all done” every time they ask for it. Maybe instead they have to do 1 more task, then all done. And after that maybe they have to complete 2 more tasks, then all done, etc etc. The idea being that yes, it is important for a person to know they have a right to refuse things, especially the older they get. But, it is also important for them to know that sometimes you don’t get your way…and that’s okay.

I’ve read a lot of posts with people arguing that kids in ABA should ALWAYS have the right to refuse something.

saywhat

Now, before you start getting riled up that I’m opposing this idea…hear me out…

Do I think all people (autistic or not) deserve the right to refuse things that harm them? Absolutely.  And do I believe that some people have genuinely been injured (emotionally, physically, sexually) as a result of over-compliance? Absolutely.

But, do I think that kids in ABA should be able to say “no” to something just because they don’t like it, and it should be reinforced every time? No. I’m sorry, but no.

Typical kids don’t get to refuse things they don’t like, why would autistic kids have it any different?

Typical kids go to school, sit in their chairs, do their math worksheet, line up when the bell rings, etc. Typical kids have to make their bed,  wash their hands before dinner, eat their vegetables, share with their siblings, put away their toys, etc. They follow rules and when they choose not to, they face the repercussions.

That’s how the world works for adults, too…We all have to do things we don’t want to do! And, when we make the choice to NOT do those things, we face the ramifications.

If we taught autistic kids that saying “no” or “all done” ALWAYS got them what they wanted…would that really be beneficial to them? I challenge you to really ponder this.

I would say NO. A loud, resounding, NO! This is actually extremely detrimental to them.

If we instill the belief that THEY make all the rules, that they call all the shots, these kids will be in for a rude awakening when they enter a society where teachers, bosses, law enforcement, and government officials actually make the rules. Sure, the autistic person can always choose not to follow the rules…they can choose to refuse the rules…but they will face consequences.

Just think about how far-reaching this is.

Their diets, their self-hygiene, their education, their lifestyle, their housing, their ability to earn a living, their ability to form relationships.

What if they refuse to eat? What if they refuse to wait for the cross walk sign to change before walking into the street? What if they refuse to leave a place at closing time? What if they refuse to pay for something before walking out of the store with it? What if they refuse to keep their hands to themselves? What if they refuse to wear clothes? I could go on and on with examples!!

There are REAL LIFE consequences for refusing to comply… incarceration, financial penalties, health issues, and even death!

Teaching people to say “No” is an important skill and is vital for ensuring one’s self-defense and dignity. BUT, teaching people to comply with things they don’t necessarily like is equally vital. The balance is teaching when it’s okay to refuse and when the consequences of refusing outweigh the benefit. When I hear parents  say that being forced to do something the kid doesn’t want to do (ie: finish a task) is “abusive” and “strips” the child’s dignity or ability to be heard….I have to disagree. Teaching a child to do things he or she doesn’t want to do (ie: completing a task) is imperative for success in all aspects of life. While we want to make sure we are not creating blind compliance that may lead to being abused or taken advantage of, we also want to make sure our kids are prepared for a world that doesn’t revolve around them and their every desire. Teaching a person to accept this reality is one of the most loving things I can think of, because it sets realistic expectations and helps them navigate through this world we live in; a world with rules and regulations.

Myth #1

4 Aug

Like I mentioned in my last post, I want to try to dispel some misconceptions people have about ABA.

One thing I keep reading, by parents who hate ABA and also those with autism who hate ABA, is this idea that ABA is for “autistic people”, and it treats them like machines, or like animals.

No, no, no. This could not be further from the truth. ABA is all around us! The principles of behavior are what make ALL of us operate.

If you have ever scratched an itch- you just employed negative reinforcement.

If you have ever been paid to do a job- you just received positive reinforcement.

If you have ever stretched your muscles- that was automatic reinforcement.

If you have ever gotten a speeding ticket- that’s positive punishment.

If you have ever been grounded or put on time out- that’s negative punishment.

Do you see what I mean?? The principles of behavior are constantly around us. All of our behavior is shaped by our environment. Everybody’s is!

When you’re driving in the rain, you turn the windshield wipers on.

When it’s hot and sunny, you put sunscreen on.

When it’s too loud, you cover your ears.

When you don’t feel well, you take medicine.

When you want to go on the internet, you turn your computer on.

Our behavior is a direct result of our environment. And, our environment includes our bodies as well.

The difference between what I’m talking about here and what people with autism experience is just a matter of intensity and structure. Okay, so not all of us have 2 hour sessions, 5 days a week, specifically carved out for ABA. But, the principles are the same. We are operating under the same concepts, constantly.

ABA is not something robotic or mechanical; at least it shouldn’t be. ABA sessions should be utilizing the person’s natural environment to have them come into contact with new contingencies. (ie: If I ask for “more”, I will get more cookie. If I scream and cry for more, I will not get more cookie). It can also be contriving their environment in order to come into contact with new contingencies. (ie: If the cookie jar is too high up I can ask for “help” and get help. If I bang on the cabinets over and over, I will not get help).

For those that hate the principles of behavior analysis….I challenge you to live a day without them. (Spoiler alert: It can’t be done.)

Perhaps it’s the just methods of a particular practitioner that you hate, in which case, I suggest you find a provider who better meets your needs. There are good clinicians out there. As Priority ABA says on their website, “When done correctly, ABA will maximize a child’s ability to express their own personality and preferences by teaching them the skills they need to communicate, play, and otherwise enjoy life.”

Reality check….

2 Aug

This past week I was browsing around online….stumbled onto a blog (which will remain nameless)…and got a slap-in-the-face style reality check.

This blog, which is fairly popular, has an anti-ABA tone throughout it’s posts. The writer, a mother of an autistic boy, posts about how detrimental she thinks ABA can be. She believes ABA shames it’s learners, it is by nature a “dangerous” treatment and is harmful to those who receive it; she believes it damages a child’s ability to form relationships, it takes away their voice, it’s overall a very limited practice which ruins a parent’s view of their child, and it over-pathologizes children.

Wow.

What struck me most was that in all of her rants about how terrible ABA is, she didn’t at all express the benefits of ABA or the years of research showing it to be the most effective treatment for individuals with autism. No, she didn’t shed light on any of that. Instead, she put out messages of skepticism and fear, encouraging others to stay away from so-called experts and to question everyone and everything.

Call me naive, but I had no idea parents out there so hated what I do for a  living. I had no idea parents out there call my work dangerous, damaging, and harmful. It really took me down a notch to hear that not everyone thinks what I do is as great as I know it is. Sure, I have worked with plenty of parents who don’t think ABA works; who don’t think ABA is valid or something they’d like to commit to. But I have NEVER met a parent who flat out loathed ABA the way this parent does. People out there think my work is emotionally injuring their child? People out there believe my work is taking away their child’s voice? It’s ruining their perception of their child? What????!!!!!????

It’s really sad to me that any parent would choose to focus on the work of a few bad practitioners and thereby discredit the entire field altogether. Would any parent hold doctors to the same standard? If a doctor misdiagnosed, or couldn’t cure a disease, or gave the wrong prescription to his patients…would that mean that ALL doctors are bad? The entire medical profession is tainted? I don’t think so. So I wonder why this is the case with behavior analysis.

It’s also really sad to me because I know the kind of work I do. I know the way I think about and feel about my learners, and I know the ways I have helped them and their families. I know that I use ethical practices that ensure my client’s dignity. I know that I genuinely care, and that I see my clients as people, not as diagnoses.  It’s just a shame that some parents out there are so let-down by some people practicing ABA that they decide the whole science is destructive.

How can I change these parents’ minds? Why do I even feel like I need to? It’s funny, because I’m normally more of a “live and let live” type of girl. Opposing views don’t threaten me; I’m secure in my beliefs and don’t care if people disagree with me. I have no interest in debating people online, and can’t stand when bloggers pick fights that they’re “right” and someone else is “wrong”.  But right now, I find myself feeling very protective of my field. And, I guess I know why. Because I believe in ABA. I believe in it’s power to change lives. So, I feel responsible to untangle the myths and misconceptions about ABA. It’s interesting that this has stirred up in me a desire to defend my position, when I would normally let it roll right off my back. And, while I still respect that everyone has their own values and beliefs, and I would never pick fights or sling mud to be heard, I feel the need to spread the word about the incredible value of ABA. So… that’s my plan.  Stay tuned! I’m on a mission! 🙂

StayTuned

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