"The Burden of Choice"

As I discussed in my ABA Haters post, ABA (arguably the most well known Autism treatment option) often gets a bad rap and is painted with a very ugly paintbrush. There are many who feel that Autism is not a sickness, disease, or something to be "fixed" or scrubbed out of an individual. On the other side of that belief, are people who feel that Autism robs families and individuals of dreams, hopes, peace, etc. Many families feel that if they can do anything to help their child with Autism improve, they will.
Not that you asked, but heres my stand on this issue: For many of my kiddos, they are not capable of communicating to someone that they WANT therapy. They are not able to ask for help or assistance with their self help skills, toileting, feeding, or play skills. That means the caregiver or Mom and Dad are left with the burden of choosing for their child. I have met parents on both side of the ABA debate who feel they are making the wrong choice....they worry that they are doing too much therapy...they worry that they chose not to do therapy. 

For parents in the position of having to choose for their child: you have the right to your choices. You have the right to fully embrace your childs Autism, or to fully jump into therapies and treatments. No one should make you feel like a horrible parent for making either choice. 
As a professional, I help kiddos everyday improve and function to higher degrees, so I do feel that if a family comes to me seeking treatment I am absolutely here to help. BUT, it is not my role to attack the people who choose not to come to me seeking treatment.

Dr Bobby Newman, in his prologue for the book "Behaviorask" (I looove that book) eloquently explains this concept of "choice":

"The basic argument comes down to this: if I dont have a skill, I dont have a choice.  Once I have been taught how to interact with others and how to function in mainstream environments, then I have a choice as to whether to do so or not. If I have never learned these skills, however, then I have no choice. I will wind up with a lifetime of supervised care......Suppose you were the individual who, without treatment, was destined to be standing alone in a corner of an institution, dependent on everyone around you to take care of even your most basic needs, rocking your body perseveratively and eliminating in your clothing....Would you like someone who could speak and could interact in the everyday world speaking on your behalf?

I had a post on Client Intake a while back, where I briefly summarized how I conduct intakes on new clients. A proper assessment and intake is necessary when beginning to work with any client. Typically the supervisor on the case conducts the intake, although sometimes the direct staff may be responsible for this task.

When I am conducting an intake, in addition to assessment, interview, record review, going over the contract, and observation, I also like to do my own brief version of  “ABA 101”. I like to review the program book, answer any questions, and discuss tips for getting the most out of ABA therapy.
The parent or family you are sitting across from during an intake initiated services for a variety of reasons. They expect to see change. They expect to learn from you. They expect their lives to improve. They expect to have their hopes met, and their fears diminished. For these reasons, its important to help families understand what they can do to get the MOST out of ABA therapy.

Just because a family has requested ABA services does not mean they understand what ABA can do, or what its all about.  Parents might ask you things like “How long do we have to do this?”, “Is he going to cry/tantrum every day?”, “Am I supposed to participate or stay out of the way?”, “Should we go buy some Skittles/M&M’s?”, “How soon until she starts talking?”, “Isn’t my child too young/old for this?”, etc.
You may be able to tell from the questions tossed your way the ABA knowledge level of your new client, or you may need to do a bit digging and get them talking to know for sure. You can also try using some ABA terms and see if the family is familiar with them. For example, “Can you describe systems of reinforcement you have used in the past to help with homework completion?”

There are multiple reasons why its helpful to know if your new client is an ABA expert, novice, or somewhere in between:

  1. Helps with composing parent training – I typically can gather enough information from my first few meetings with a new client to start creating parent training documents. Through observation or interview I will learn about the issues the parents are struggling with: Compliance, Bedtime routine, Transitions, Feeding, Toileting, Sibling interaction, etc. Or, basic behavior concepts like Reinforcement. Knowing the ABA knowledge base of your client will help you to individualize your approach to parent training (which will make the information more effective, if they can actually…..you know….understand it).
  2. Helps with designing behavior plans – The behavior plan basically states how all caregivers will react to a specific behavior, and what new behavior will be taught and reinforced. I can write very simple behavior plans, or pretty complex ones. Some behavior plans I hand to a staff member, and sometimes there is no staff which means the parent gets the behavior plan. Its important as an ABA professional to know how to modify what you come up with to fit the audience. You WANT the family involved, so be sure you aren’t overwhelming or frustrating them with the documents you create.
  3. Helps with selecting best teaching methodology – The teaching methodology used should encompass what is best for the learner, the family’s preferences, the expertise/training of staff, etc. Some households are better suited for DTT, while in other households NET/Incidental Teaching may be a better choice. Also, some parents may have negative views about certain methodologies, such as being very against DTT. If so, a different teaching methodology can be utilized that has more parent “buy-in”.
  4. Paves the way for active parent involvement – Similar to having a contract to review, explaining ABA effectiveness strategies sends the message that you are a professional who takes your job seriously, and it makes it very clear that you will not be doing the “heavy lifting” alone. I like to explain this to parents by saying that I will work hard, they will work hard, and the kiddo will work hard…..we all have a part to play.
  5. Provides information for your Shaping  process- Much of what ABA professionals do with new clients involves shaping. Most of us know how to use shaping to teach the kiddos we work with, but much of the work we do with the family also utilizes shaping. If I have just started to work with a parent who is new to ABA, I can’t walk in and hand her an Automatic Stimulus Pairing procedure  and expect 100% follow through. That’s completely unrealistic. I have to start slowly, meet the parent where he/she is, and gradually raise my expectations over time. If I don’t know how knowledgeable the parents are about ABA, then shaping becomes much more difficult.

Below is the handout I give to new clients to provide concrete strategies that will help them get the most out of ABA therapy. I find that families who incorporate these strategies often report the most satisfaction, or see the most gains from therapy. The reason why is simple: ABA therapy is meant to be intensive and to generalize across individuals and settings. The more the family is doing what I am doing, the more effective treatment will be.

Lemon” -  Any product with flaws too great or severe to serve its intended purpose. Often used to refer to cars that seem perfectly fine on the exterior, but quickly break down once you start driving them.

I mentioned in my last QOTD a great podcast series created by JJ Carolan. One of my fave episodes from her podcast is called "Identifying Fad Science". It’s all about the responsibility of BCBAs to help teach families/caregivers how to test unproven therapies, and how to be a critical consumer.
(I will mainly refer to BCBA’s in this post, but all ABA professionals have a responsibility to help our clients distinguish between true science and junk science. More than an ethical requirement, I believe we are morally bound to do this).

I have learned the hard and awkward way, that no matter how nicely & professionally you explain to a family that you are NOT a doctor and are not qualified to answer questions outside your expertise, you may still get very difficult, emotion packed questions tossed your way.

I don’t meet many families who are only doing ABA therapy. Some of the other treatment choices families choose are supported by research, and some are not. As a Behavior Analyst, it is your responsibility to have knowledge of available treatments and which ones are effective. If you come across a treatment you are unfamiliar with, it is your responsibility to conduct a literature review and gather information. BCBAs cannot administer or promote interventions that are not empirically supported.
 If you’re not a BCBA and think this topic doesn’t apply to you, then think again. Even if ABA is a part time job to you, you’re signing up to provide treatment to an individual who needs help. Would you want your dentist sprinkling fairy dust on your broken tooth? Would you want your doctor to tell you to jump 2 times to fix a broken arm? Well, your clients also expect to receive effective treatment.

So if you can’t endorse or support unproven treatments, then what can you do when these issues arise?

1) Always defer to expert opinion, such as a Doctor or an Occupational Therapist. Clearly state your qualifications and training, and explain why you are not the appropriate person to ask. Be firm and clear, without being rude or judgmental. Please don’t be allergic to saying “I don’t know”. Say to the parent “I haven’t heard of that, but I can look into it for you and bring back some information that we can review”.

2) Give the family the tools to be a critical consumer. Help your clients learn to collect and track data, in order to measure the effectiveness of treatments. I understand why most families do not want to dig through research journals. Research isn’t always exciting, but it does save wasted time spent pursuing lemon treatments.  

Below are characteristics of Pseudo science, aka Junk Science, aka “Lemon Treatments”. These should be in your mental arsenal, ready at a moments notice to help explain to a family why you cannot endorse or support the treatment they are so excited about. Lemon treatments may not just waste money or time, they could also be potentially harmful or dangerous.

5 Characteristics of Pseudo Science

1. Promise of lightning fast results- Overnight or rapid changes are promised, along with just a few easy steps to follow.

2. Requires little experience to administer- Just reading a pamphlet or attending a seminar is enough to learn how to administer the treatment. Also, beware of treatments lacking sufficient supervision or oversight by a qualified professional.

3. Emotionally appealing slogans- “Choosy moms choose Jif”…so I guess moms who choose Skippy should be jailed?? Beware of emotional words like “cure”, “miracle”, or “life –saving”, these treatments are trying to pull on the heart strings.

4. Lack of peer reviewed evidence – Where is the data? Is there any? How is progress measured? Has the treatment been replicated in various studies?

5. Exact procedure is vague or secretive- Not too long ago, a parent asked me my opinion about a new treatment they were pursuing. I hadn’t heard of the treatment, so I started asking questions about how it worked, what was it supposed to do, etc. The parent could not answer my questions, and commented that I was asking too many. My response was “Well, if I were paying for this expecting it to help my child I would want to know exactly how it works”. Beware of treatments where you have to pay a membership fee, attend a lecture, or buy the product before anyone will explain it in depth.


Todays QOTD is less a quote, and more a helpful resource.

Like most BCBAs/ABA therapists, most of my time is spent in my car. It is my office during working hours. Recently I have begun taking advantage of all that drive time by subscribing to ABA related podcasts, so I can learn while I drive.
I have recently found two podcast series that I realllllly enjoy, and wanted to share with my blog readers. I think these are great for busy parents or professionals on the go who want to stay on top of special needs strategies and research in a way that is easy to digest (translation = without all the jargon). What I like about these podcasts is that even though its super up to date information, you dont need years of experience or advanced degrees to understand the information being presented. Anyone could easily listen and learn.

Special Parents Confidential is a resource website for parents of children with special needs. They cover a variety of special needs other than Autism, such as Downs Syndrome or Hearing Impairments. Their podcast covers lots of "need to know" topics, such as Medication Management, School System/IEP's, and living trusts/wills. I particularly recommend their podcast episode on ABA, I thought it was very through while also being presented in a clear, easy to understand way. Here is a link to their podcast: https://itunes.apple.com/us/podcast/special-parents-confidential/id624628417?mt=2

*For ABA professionals, I recommend a podcast series done by JJ from BeABetterBCBA.com. Very informative, but also fun to listen to. Here is a link to the podcast:  https://itunes.apple.com/us/podcast/behavioral-bytes/id562794063?mt=2

The benefits of ABA therapy are well documented and cover varying functioning levels, ages, and methodologies, with supporting research that spans decades. Don’t quite believe that yet? Have a look here, here, here, or here. The “pros” of ABA are numerous.

If you have come across information online about ABA haters, or the “cons” of ABA, they tend to be categorized into bad experiences with a company or person, inaccurate or outdated information, or people who feel ABA is wrong because it tries to “normalize” individuals with Autism. I’ve already addressed those criticisms of ABA on my blog, so no need to do that again.  

So am I saying there are only advantages, or benefits to ABA therapy? Is it all great, ALL the time?

Well, since the name of this blog is “I Love ABA”, clearly my opinion of ABA is positive. :-) 
However, what I think many families do not fully consider  are the “costs” of ABA therapy.

You may have heard before that its always recommended to weigh the costs and commitment required to do something before agreeing to take it on (Luke 14:28 NLT). This is very good advice. Beginning something without fully understanding what it will cost you can lead to disappointments or frustrations.

Think of starting a New Year exercise plan. Many people join gyms, buy workout clothing, alter their diet, etc. However after a few mornings waking up to stiff and sore muscles, or eyeing the doughnut box at work, many people abruptly discard these exercise plans. Why is that? Because the full costs weren’t considered.  While we all know the benefits of regular exercise, living that kind of lifestyle will also cost you something.

Similarly, making a decision to begin ABA therapy for your child can be quite different from actually living out that decision everyday.

As much as I support and believe in what ABA can do, I also meet and work with countless families who don’t really understand the commitment that ABA therapy is. The potential benefits of ABA therapy are so numerous I can’t even list them all here, but every day will not be peaches and sunshine.

The following advice is to help parents on the ABA fence make an informed decision. I’m definitely not putting ABA down (have you seen the name of this blog??), but please, know what you are signing up for:

  •       $$$$$$$$$$- While talking about the “costs” of ABA, the literal cost must be mentioned. ABA therapy is expensive. Why is that? Well, it’s administered by highly trained professionals (more on that later), it’s intended to be intensive, it requires rapidly changing supplies and materials, and the funding sources have not quite caught up to the diagnosis rates. High demand and low supply combined with a credentialing process that takes years to achieve = a not so affordable therapy option. 
  •      Time- ABA therapy could cost you time, spontaneity, and control of your life. Professionals will come into your home multiple times a week, and expect you to participate in the sessions, collect data, practice behavior management strategies, etc. Some of my clients have rearranged family vacations, anniversary trips, doctor’s appointments, even moving, based on what works best for the therapy schedule. ABA takes a lot of time; time that the professionals give to your child and time that you give to the professionals.
  •       Standards/Expectations- So how could ABA therapy cost you your standards? Well, ABA is a unique field. The people who are the most experienced, seasoned, and qualified in this field are typically not the ones who will work directly with your child. Unfortunate, but true. ABA therapists have varying experience levels, and are the ones who work with the child 1:1 to teach skills. The BCBA or Consultant is the one who designs and writes up what the therapist is supposed to teach. So you may pursue ABA therapy thinking you only want the best, most degreed professionals working with your daughter. Then you realize in your area, no one pays for ABA,  the  best companies have 3 year long waiting lists, and that one Consultant you found can only offer 1 session a week. So now what? I hate explaining this reality to new clients, but unfortunately the people in this field with great experience and expertise are in super high demand. They either charge very high hourly rates, or their schedules are completely booked.
  •      A little thing called privacy- So-0-0, no one talks about this part, but it’s true. You may need to develop a new definition of the word “privacy”. The ABA team will see your house messy. They will see you answer the door in curlers and a torn pink robe. They will see you hit the peak of frustration when dealing with your child, as well as explode with joy when your child shows amazing progress. They may see or hear things about you and your family that even your closest friends don’t know, such as how often you argue with your spouse. Speaking of…….
  •       Marital Stress- It can be quite stressful on a family to have a special needs child who is not getting proper services. However it can also be stressful on a family to adjust to a commitment to ABA. Everything becomes scheduled and regimented, and making a simple decision such as “Should I take my spouse on a Florida vacation this summer?” has to be discussed with a team of people. In the course of doing my job, it isn't unusual for me to have parent meetings that dissolve into heated hubby/wife arguments, sit and observe a family eating dinner,  or be put in the middle of tense or awkward family dynamics. It gets even more awkward in situations where one parent is on board with treatment, and the other parent is not.
  •      Pride- This could be a big one, just depending on the type of person you are. Not to toot my own horn, but I look pretty young. I also don’t have any kids. So imagine me giving parenting tips to a parent who is twice my age, and has 4 children. Definitely a situation that can be a hit to the ol’ ego. Many ABA therapists are 20-something college students, and many BCBA’s are also pretty young. This just tends to be a young field….I think its all the energy we need to do this :-) Regardless, as a parent it can be painfully humbling to have a little whippersnapper explain to you exactly what you should be doing differently with your child, and then darn her, actually be right!
  •       Remember your other kids??- As an ABA therapist, I used to show up to my clients homes with toys, gadgets, edibles, DVD’s, you name it. I would work 1:1 with my client, clapping and shouting and blowing bubbles as reinforcers….while my clients siblings would look on in amazement, not understanding why no one showed up to play with them for 3 hours. This can be really tough, but as a parent ABA may definitely cost you some interaction time with your other kids. It’s almost like your child with Autism is now lead singer of a pop group, and your other children are the back up singers. ABA is very time intensive and labor intensive, and many parents tell me that after a day of collecting data, managing behavior, or meeting with the Consultant, they are just too exhausted to meaningfully interact with their other children.
  •      Social life- Lastly, ABA may cost you a social life. Beyond the time commitments, lack of spontaneity, and financial crunch ABA may cause, you may find yourself interacting and spending more time with the ABA team and Consultant than with your best friends. You may find yourself using “ABA speak” like mands, target behavior, trip training, or prompt dependency, which your friends may find just downright odd. It’s hard to answer simple questions from your friends such as “So, how’s that ABA going?”, yet when the Consultant asks you for a progress update you are bursting with news to share. Your friends may think it’s weird if you call them at 9 am because your son just independently pooped in the potty, but the ABA team will clap and cheer with you! It can be difficult to have a social life, when so much of your social interaction is with a team of behavior geeks.
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