Fist things first: WHY is diagnosis important??


If you are seeing red flags or concerning behavior in your child, is it absolutely essential that you pursue a formal evaluation?


...Well, no.


But, the benefits of obtaining a diagnosis of Autism can include access to services/treatment/an IEP, access to specific funding or disability resources or support, possible reduction of parental/familial stress or anxiety about the child's behaviors or differences, and an increased understanding of your child's unique needs and motivations. Basically, the sooner you know what is causing the red flags you are observing, the sooner you can DO something about it.




Many Autistic adults report having gone through life feeling different, odd, or struggling socially, and express wishing they had known much earlier in life that they weren't "wrong", while everyone else was "right". It can be extremely helpful for a person to know how their brain works (and why), so even if as a parent you aren't concerned if your child could be Autistic, your child may want to know one day.





TIPS

· Ask questions about alllllll the things! Make a list before you even arrive, just to make sure you get all your concerns out when you are face to face with the clinician. This is the time to express your concerns and get answers

· Don’t over or under report. What I mean is, describe what typically happens as truthfully as possible. It will be very clear to the clinician if you are glossing over serious concerns, or if you are minimizing strengths

· Make sure your child (and you!) are in a good place for the appointment: fed, rested, calm, etc. While many parents bring along a tablet to keep their child entertained on the way to the appointment, keep in mind that tablet will have to be removed at some point. It may be a good idea to bring a less powerful reinforcer so you don’t push your child into a full tantrum right as the appointment starts

· Avoid jumping in to help/guide your child, or directing your child to attend to the assessor (e.g. “C’mon Ally, push the red car!”). I know, it’s hard to just sit and watch your child perform poorly. But that is exactly what the assessor needs to see. Don’t worry, there will be parts where the assessor needs your input.

· Don’t expect this whole process to be wrapped up in one 2-hour appointment. Proper assessment takes time, you may encounter waiting lists, and most likely there will be more than one office visit required.



WHAT TO EXPECT

Regardless of the diagnostic tool used, there are certain commonalities you can expect. To name a few:

· The “majority example”. If your child exhibits a certain behavior 5% of the time, and a different behavior the other 95% of the time, the assessor will focus on what they do 95% of the time.

· Difficulty leaving/separating from the caregiver, even if that person is in the same room. This is very common, don’t feel embarrassed if your child clings to you and refuses to interact with anyone else.

· “Who is this child?”. By this I mean it is very common for the child to behave differently during assessment than what the parent is used to seeing. If the child babbles at home, they may be silent during the appointment. If the child bites and pinches at home, they may be sweet as pie during the appointment. It is also important to understand that the assessor must make decisions based on what they are seeing. This is why the evaluator will likely have you complete multiple checklists or forms, so they can compare what you typically see against the snapshot of the child they are seeing.

· Super, super short attending to tasks (e.g. child stays seated for .5 seconds). VERY common. Don’t become fearful that the assessment will be ruined, or full of errors, because your child just flits from one task to another or will not participate in any tasks. This is actually part of what the assessor needs to see, and it provides valuable information about functioning.

· Don’t expect to get to the end of the appointment and hear the assessor say “Welp, he’s Autistic”. Allllll of the data, scores, and observations must be compiled and analyzed, and this process takes time. While it is very okay to ask the evaluator their initial impressions, please give the evaluator time to properly review all of the data before confirming any diagnosis.



NEXT STEPS

· After the diagnostic appointment, it will likely be a few weeks (or longer) until a follow-up appointment. The follow-up appointment is where the evaluator reviews the results with you and will go in depth to discuss recommendations.

· The formal diagnostic report will be long, detailed, and jargony. Kind of like reading a technical manual upside down. Be prepared to ask questions, and then ask more questions, until you actually understand the clinician’s report.

· If your child is not diagnosed, sometimes this can mean additional diagnostic tools are recommended, the child may currently be on the cusp and another evaluation is recommended for the following year, or there may be other explanations for the red flags besides Autism.

· If your child is diagnosed, this just means that in most cases they now become eligible for a myriad of services. It does NOT mean anyone can predict their future, tell you they will never (fill in the blank), or tell you that (fill in the blank) will always be a struggle.

· Please be prepared for more delays. In a perfect world, families would move seamlessly from diagnosis to treatment. Unfortunately, in our actual world, there are far more people needing services than providers offering services. There may be a wait to access various therapies, get into your school districts Autism program, apply for SSI, etc.





*Recommended Reading: After the Diagnosis



*Here is a parent perspective of the diagnosis appointment
True words.



*Recommended Reading: ABA & "Normalization"



*Recommended Read:" Behavior Analysis & The Diversity Issue", by Chelsea Wilhite, BCBA



With the current backdrop of race, the police, and social activism happening in the US (and around the world), many ABA providers are seeking ways to improve the quality of services provided to all clients. ALL clients, regardless of race, may have encounters with the police where they may "appear" to be disrespectful, disobedient, or dangerous, simply due to cognitive, communication, social, behavioral, or emotional challenges. 

How can we better help our clients advocate for themselves and their own needs? How can we better support black and brown clients? How can we better support clients who due to the severity of their problem behavior, or simply their size/height, are at an increased risk for police interaction?

All important questions to ask, but a far more pressing question to consider is: How does a lack of diversity within the field, prepare providers to support and understand a diverse clientele?

As part of the BACB ethical guidelines, providers are obligated towards cultural competency and awareness of how the dynamics of ethnicity and race could impact treatment, assessment, and overall quality of services. This could include gender, race, culture, national origin, religion, etc. (source: www.Bacb.com).  

I have spent most of my career living and working in one state, and even so I regularly interact with clients of varying races, languages spoken (even if English is spoken, communication can be challenging), religion, sexual orientation, etc. 
It's 2020..... I don't think anyone is exempt from needing to improve (and improve some more, and improve some more) upon their OWN biases, and areas of ignorance when it comes to relating across cultures.  If you work in this field, or plan to work in this field, you must be aggressively committed to being the best practitioner you can be to people who are nothing like you, don't believe what you believe, do not look like you, and didn't grow up how you grew up. 

Now that you understand this isn't optional, let's take a look at current diversity in ABA:

  • Stats are lacking. Many of our industry boards/organizations do not publicly share demographic info, and the process of collecting this info is always voluntary for practitioners. As a result, we do not have hard, cold facts about diversity in this field. The exception to this would be gender data, which is more available.
  • As a field, our training/education requirements around diversity and cultural competence are much less robust than the expectations around ethics, supervision, etc. There are also no CE requirements on this topic.
  • Research can be very hard to find that focuses on practitioner (not client) diversity, and how this impacts our field, and our profession. More research is badly needed in this area. (I for one would love to see research about the the practitioner experience of lack of diversity. Meaning, when you are always the only black BCBA in the room, what impact does that have?)
Source: (www.brianconnorsbcba.com) 



How do these problems impact ABA as a whole? Glad you asked.

"The foundation of ABA looks at the antecedent (what comes before the behavior), the actual behavior and the consequence (what follows the behavior). What follows the behavior will either continue or strengthen the behavior or weaken the behavior. Therefore, the environment we live within could be providing a consequence which either strengthens or weakens the behavior. ....This developed culture is displayed in behaviors which get the need met of the individuals in the cultural group.

As a behavior analyst, we are often working toward removing a behavior which the child’s social environment has deemed “inappropriate”. Certainly many times the behaviors are not effective in giving the child a healthy lifestyle. We need to remember the behavior is getting a need met and may be effective in their current environment. We must also remember when determining a replacement behavior, the behavior is appropriate to the child’s cultural community." (Source: www.thekeyconsult.com)

A very important takeaway here is that you do not serve clients in a vacuum. No one is just "one" thing, including your clients. We are all a product of the many environments that have shaped us, throughout our life. To neglect to face this head on during all phases of treatment (from marketing, to hiring staff, to assessment, to actual services) is at least disrespectful to the dignity of the individual, and at most harmful to your clients.

This 2016 article (Developing the Cultural Awareness Skills of Behavior Analysts) has some great recommendations to address this issue head on. To name a few:

  • Understanding our own cultural, ethnic, and racial biases is the first step towards competence, and growth. As I like to put it, "know your own stuff".
  • Learn more about the clients cultural worldview through assessment, open dialogue, and by being sensitive to issues of power/authority and how they creep into conversations of race.
  • Consider language barriers. As I said above, even when I have worked with families who had been living in the US for years, sometimes language was a real barrier. Even if someone speaks English, they may struggle to communicate or to understand when English is spoken to them. This applies to written communication as well (paperwork, forms, emails, texts, etc.).
  • How diverse are your resources? Beyond flashcards, photos, manuals/books, or the like, have you thought about teaching materials? If working with a Korean child, do you regularly bring only non-Korean dolls/toys to sessions? Does that matter? Why or why not?


So, how are YOU doing with applying these strategies? How is your employer doing with applying these strategies? Is your ABA workplace diverse? If you only look at senior leadership positions, is your workplace still diverse?

Or are we applying our science to this issue in theory, but not in practice?


References:

https://www.bacb.com/ethics/#ethics_requirements

https://www.brianconnersbcba.com/blog/where-is-the-diversity-in-applied-behavior-analysis

Fong, E. H., Catagnus, R. M., Brodhead, M. T., Quigley, S., & Field, S. (2016). Developing the Cultural Awareness Skills of Behavior Analysts. Behavior analysis in practice9(1), 84–94. https://doi.org/10.1007/s40617-016-0111-6

https://thekeyconsult.com/culture-applied-behavior-analysis/








When it comes to ABA therapy services?


Oh yeah.

This is 1000% true.


*Suggested post: Parents We Need You

If your child was participating in any therapies before this global crisis began, those services likely transitioned to a telehealth model within the past 30 days or so.

Ideally, this process was explained to you, along with potential benefits vs risks, and you feel competent as a parent/caregiver to utilize this remote model of therapeutic intervention.

If not, you are the the reason for this post.


For far too many families, the decision to move to telehealth for ABA services was made for them, or presented as a "take it or leave it" option. This could be due to staffing issues (as more and more people are self-quarantining), more funders allowing for telehealth, or just the preference of the service provider. Maybe you are filled with anxiety and confusion as to how telehealth will be effective for your child. You may think your child is too young to benefit, or too old to benefit, or can't attend to a screen, or attends TOO much to a screen, etc.

Whatever your particular situation may be, I hope to help alleviate some of your concerns by providing an overview of Telehealth ABA.

Let's dive in...

Before our current quarantine reality, telehealth was being used quite effectively to provide ABA services to consumers in under served areas, to supplement in-person services, and to work with consumers internationally. I have also found benefit of telehealth when it comes to illness or travel (basically, being unavailable). If someone in the consumer home has a contagious illness, I can still support my client remotely using telehealth. Or if I am traveling for a professional conference, I can check in on my clients using telehealth. So even if you aren't currently a fan of telehealth, know that it does have benefit for many families.

To provide a definition, Telehealth is the use of communication technology to assist in education and treatment of health related conditions (Ferguson, Jenny et al. 2019).


Telehealth is not something to just jump into. Like any other therapeutic service, there are some foundational steps to complete first. Before beginning ANY telehealth therapeutic treatment, you and your service provider should be openly discussing the following:


1. Technology Capability - As a caregiver, how comfortable are you with using technology? Do you have access to reliable wi-fi? Do you have a quality web cam, camera, or cell phone to use for video chats or calls? Will you need to purchase a headset or microphone, or are your computer speakers fine to use? Do you have a scanner and printer, if needed? If not, who will help you get up to speed with technology?

2. Scheduling & Availability - Are there time zone differences to consider? What is your schedule of availability to virtually meet with the service provider? Does telehealth increase or decrease your availability? What time of day would work best for your child? Are they more likely to be attentive in the am or pm? Is the telehealth schedule being created based on what works for your household, or just when the service provider says they have time?

3. Caregiver Participation - Are your current stress and emotional levels at a point where you can do this? Has it been explained to you that telehealth may require an adult in the home assist with the session, for the duration of the session?  Do you know how to manage challenging behavior in the absence of the service provider being physically present? Do you understand how to provide reinforcement to your child, in the absence of the service provider being physically present? What will your other children be doing while you are assisting with the telehealth session? If you are also doing school at home right now, can you do both that and this?

4. Unique Client Needs - What does your child need in order to benefit from this? Visual supports? Token boards? If your child is very active and reinforced by physical touch or play, how will that happen virtually? Will it be upsetting or confusing to your child to see and hear the service provider, but they aren't physically there? Should the treatment goals be reduced for telehealth sessions? What abut the session length; can your child participate in a virtual 2 or 3 hour session? Will there be a Registered Behavior Technician (RBT) or direct therapist with you, as the Board-Certified Behavior Analyst (BCBA) joins in virtually? Or will it just be you and your child? Which is likely to be more effective?



There are 3 main services delivered by ABA providers: Supervision, Direct Service, and Family Support (commonly referred to as "parent training").
I will explain how each type of service could look using a telehealth format. Remember, the specific service that is selected for a telehealth modality should be decided by you and the service provider based on what would be most effective for your child. In other words, direct service via telehealth may not be a great idea, just depending on the specific needs of your child and the unique demands of your household.


  • Supervision is most often provided by the BCBA for a percentage of the hours the RBT or direct staff work with your child. Some providers may choose to have RBT's continue coming to your home, with the BCBA joining the session virtually. Other providers may have both the RBT and the BCBA conduct virtual sessions. There is no set answer to this, and it will vary by area and by provider. This is also a funding decision, as not all funders permit non-BCBAs to provide telehealth. In the event that you are only receiving services from a BCBA, they do not require supervision. However, RBTs and Board-Certified Assistant Behavior Analysts (BCaBAs) cannot practice independently.
  • Direct service is most often provided by the RBT or direct therapist. If the RBT you work with is able, in-person direct service can still occur with the BCBA supervising remotely. If not, the RBT and/or BCBA may provide direct service virtually. Depending on the unique circumstances of treatment, direct service may need to be modified for telehealth. For example, goals may need to be reduced or placed on hold temporarily, like goals that require peers or going into the community. Any issues with your child attending, leaving the instructional area/running off, or trying to hit/disrupt the video call equipment can be addressed with the BCBA. They will be able to tell you how to help your child benefit from telehealth services. Please note that direct service provided virtually will most likely require an adult in the home assist with the session as far as prompting, delivering reinforcement, managing challenging behavior, troubleshooting technical difficulties, etc.
  • Family support can occur with any parent or legal guardian, and will have specific goals and measurable outcomes. Family support can include your child, and it can also occur with just you and the BCBA (most funders only permit BCBAs to provide family support). Keep in mind that due to the virtual format, family support time may steal your attention and focus away from other household activities. For example, if the BCBA needs to virtually meet with you to review progress and discuss changes to the treatment plan, it may be unrealistic to try to do this as you simultaneously cook dinner or engage your other children. 


Depending on the specific service being delivered, the amount of upheaval and stress in the client household, the current functioning of your Autistic child (will telehealth work for them??),  and caregiver ability to fully participate, telehealth can be more or less beneficial to families.
And that is OKAY.

You are not required to continue therapy services in the midst of a global pandemic. Think about the pros vs the cons, and make the best decision you can for your family.



*Resources & Further Information:

ABA Parent Training using Telehealth

Behavior Babe

Central Reach

Benefits of Telehealth

ABA Parent Training via Telehealth video 1, and video 2 

Podcast: ABA services in a global pandemic




ABA employers/managers: During this crisis, are you actually listening to your staff? Because without them, there really is no company.





"Leaders who don't listen will eventually be surrounded by people who have nothing to say." 
Andy Stanley

Here we all are, in the midst of an unprecedented life event and trying our best to continue providing ABA services to the clients who need our help now more than ever.

So yeah, no pressure or anything. :-)


Prior to this pandemic, maybe you had some clinical telehealth experience, maybe you didn't, but either way I hope to provide either a review of information you already know, or a crash course in Telehealth 101. 

I suspect that for many of us even after the current crisis ends, telehealth could become the New Normal as far as the way we do our jobs. Don't you think? 
If so, then it's pretty important to get your skill set up to speed with using technology to serve consumers.


So take a breath, relax, and let's dive in to some strategies for implementing your ABA magic remotely!

You can listen to the audio presentation here.



* HUGE* resource file for this presentation: Click Here to Download
Sharing is caring, pass this resource along to your ABA colleagues! We're in this thing together.



Today's quote of the day is from ..... Me!


See below for an excerpt about knowing your identity as a clinician, from my newest book, The Practical ABA Practitioner:




*Recommended Reading:

Runnin' on Empty












If you haven't experienced it yet as a supervisor/Program Lead/BCBA, you will: Being in charge of those who want no one in charge of them.

Sounds like a riddle or something. But in real life, it's much less humorous.

As someone in a leadership position (regardless of your actual title), you probably imagined your job would include lots of mentoring, providing support and encouragement, staying available to your team, selflessly putting their needs before your own, and definitely.. absolutely.. NOT being like that one supervisor you had who was just the worst.
You probably imagined your team or supervisees would accept your teaching and support with gladness, gratitude, and a huge "Thank you so much, you're the best!".

So it can be a pretty big let down when instead your efforts are met with disdain, condescension, irritation, or just flat out insubordination.
When no one is implementing your behavior plan.
Or no one on the team ever replies to your emails.
Or your supervisee requests to work with a different BCBA.

Again, if you haven't experienced this yet, just give it time. It's darn near impossible to move into a position of leadership and never have to deal with difficult people. Actually, I would say the higher up in leadership you climb, the more opportunity you have to deal with difficult people.

So if I may, I'd like to offer some tips for this daunting challenge. Here is what I've found helpful in the past:



First, check yourself -

1.      Are you making a difficult situation worse by being overly offended, getting all wrapped up in your feelings, and assuming the person hates you just because they don’t listen to you? Guess what? When you are the boss, everyone won’t like you. There really is no way around that. Stop taking things so personally.
2.      Have you calmly and clearly communicated your expectations, specified the areas where they aren’t being met, and helped the difficult person create an action plan? No? Why not?
3.      Do you spend more time at work complaining about the difficult person, rather than talking to the difficult person? Come on, be honest.
4.      Have you lost your objectivity? Do you get tense, sigh heavily, and roll your eyes every time this person calls you or sends you an email? If so, then your irritation is likely coming through in your interactions with this person.



After you have honestly looked at your own behavior (do not skip that part, it’s really important), now it’s time to take a good look at your supervisee/employee -

1.      Is this an issue of poor fit? Sometimes you have to taste the food to know you don’t like it. Similarly, some people need to start working for the company, or hold the position, before realizing it isn’t for them. Have an open conversation with the difficult staff about their current contentment with their role/the company.
2.      Look at the reinforcement history: has this person had good supervision/leadership experiences before? How do you compare to their previous leaders? Are they simply not used to having high expectations placed on them? It's hard to follow when you've never been led.
3.      What career goals does this person have? One of the most effective ways I have found for dealing with difficult supervisees is to help them connect their personal career goals to their current work performance. For example, if you know the staff is pursuing their BCBA then help them connect the dots between being able to accept feedback now, and how much more challenging it will be to accept feedback you don’t agree with as a BCBA. These clinical “soft skills” only become more important the higher up you go in this field, so it’s important to learn professionalism and humility now.
4.      Lastly, are you dealing with a toxic employee? If so, then move straight to GO, and collect $200. 😊 Unfortunately, a toxic employee has the potential to bring so much harm to staff morale, client satisfaction, and work culture, that it may be a better decision for the sake of the whole team to part ways, and wish them the best of luck with their next employer.





** Helpful Resources:








"Bad bosses compel good employees to leave"
www.Forbes.com

"The way your employees feel is the way your customers will feel. And if your employees don't feel valued, neither will your customers"
Sybil F. Stershic

"The only thing worse than training your employees and having them leave not training them and having them stay"
Henry Ford

"Strive not to be a Success, but rather to be of Value"
Albert Einstein

"You don't get paid for the hour. You get paid for the value to bring to that hour"
Jim Rohn





Get Excited!

For those of you out there, laboring away, giving your all to your clients, working from 8am to 8pm every day (and getting paid for 1/2 that time), typing up 25 page reports at 2 am, laminating flashcards until your fingers are sore, putting hundreds of miles on your car, going to work bruised, discouraged, and exhausted, and eating your lunch in your car...I have something for YOU.

My newest book, 'The Practical ABA Practitioner', uncovers and openly discusses all aspects of ABA practitioner life, as in the good, the bad, & definitely the ugly. ;-)
This book is all about the practitioner experience working in this field, the day-to-day reality, how to plan out a successful career, and what common pitfalls to avoid. Especially for those of you brand new to the field, or newly certified.


If you want to work in this field, you need to read this book.
If you're tired of working in this field, you need to read this book.
If you LOVE working in this field, you need to read this book.

In preparing to write this book, I talked to lots and lots of practitioners about their experiences working in this field, reached back into my own early days as an in-home ABA therapist, and I also perused the resources out there about ABA as a career: What's it like being a BCBA? What are the pros and cons to becoming an RBT? What are the joys, the pressures, and the challenging to meet expectations of this industry?


Dying for some specific details about the book? Sure!
 "The Practical ABA Practitioner" addresses:

  • Professional Burnout. Yup. I dedicated an entire chapter to discussing loving what you do, but hating the way you have to do it, and being eternally exhausted. You're welcome.
  • The end of the book is a huge treasure trove of practical practitioner tips and resources (handouts, job performance tips, staff satisfaction surveys, suggested parent policies, etc.) that will help you do your job better. Seriously, its just pages and pages of stuff. :-)
  • Work-Life balance as a busy full-time BCBA: Fiction or Reality?
  • Developing and refining your clinical identity as an ABA practitioner.
  • What are employers looking for when hiring RBT's? What about BCBA's?
  • Should you pursue BCBA certification? Is it really for you?
  • How to revitalize your passion for this field.
  • What kinds of pitfalls should newbie BCBA's watch out for (because they're vulnerable to these issues)?
  • Why are the staff retention rates in this field so terrible? To put it another way, why are so many ABA companies bleeding staff?
  • Tips for choosing between various employment options, and red-flags to look out for.
  • How to BE the change when working in less-than-ideal conditions.
  • Holding this field accountable for the way we treat direct staff/ABA implementors.
  • How to to develop your personal value system in this field, and practice with integrity.
  • How to be truly successful as a practitioner, for years and years to come.
  • What are some of the main reasons why quality practitioners walk away from this field, and don't look back. And how we can keep them from walking away.




Treat yourself, and do something GREAT for your career... get this resource and be encouraged and strengthened.

Click here to find this brand new resource on Amazon!







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