I don't work with adult clients often, but I do regularly work on life skills/building independence, and pre-vocational training stuff with children and adolescents.


The thing about adulting is that trying to shove a bunch of information and life lessons into your grown child is a bit too late. Especially if we're talking about Autistic adult children who may or may not ever live independently, may or may not hold down steady jobs/have a career, and may or may not attend college or technical school.


Wayyyy before you think you need to start teaching this stuff, is when I recommend teaching this stuff. :-)


For any parent, its a hard thing to look at your 10 -year- old and start thinking about teaching them to do laundry, independently grocery shop, change a flat tire, or shop online. But, if you expect your child to do all these things one day as an adult, then yes, absolutely start teaching it early.

Your teen or adult child can start learning today, to do things like:


  1. Personal care/Hygiene/Grooming
  2. Shopping & Money Management
  3. Electronic Use & Internet Safety
  4. Vocational Training (*which should be a natural extension of interests, hobbies, or strengths)
  5. Driving or Navigating Public Transportation
  6. Time Telling/Time Organizational skills
  7. Employment Seeking (resumes, interviews, etc.)
  8. Self-Advocacy/Assertiveness ---- probably my #1 Adulting 101 skill to teach


For children with disabilities (not just Autism), it may take more time, more repetition, and more real-world practice for these skills to be taught. Which means starting sooner rather than later is the way to go. Think about your own adulting for a second-- when you first left home, did you know how to scramble eggs without burning them? Or manage a credit card responsibly? Or negotiate with a pushy salesman when buying a used car? If you answered "yes" to these questions, then you were far superior to most of us! 

The reality is that whether your child will ever be able to live separately from you or not, as a parent I'm sure you want to help them be as independent as possible, and be able to make decisions about their life/have a say in their own life. Teaching some common 'Adulting 101' type of skills can be the way to do this, and be sure to combine that instruction with actual real world practice. Despite what we may like to think, school will not teach our children everything they could possibly ever need to know by graduation day. Nope.


What do I mean by real world practice? Well, I've worked with high school age clients before who received vocational/life skills training at school, or through a special program that helped them get part-time jobs. The problem was, these skills didn't generalize outside of those settings. If Charles learned to cook chicken breasts at school with Ms. Larson, that did not automatically mean he could cook chicken breasts at home, with Mom and Dad. If Kacey helped out in a local daycare classroom every Tuesday afternoon, that didn't not mean she could successfully baby-sit her younger brother at home.

Like any other skill, life skills need explicit, intensive instruction, as well as multiple generalization opportunities in real world situations. Multiple generalization opportunities means that the instructor/supervisor needs to differ. The setting needs to differ. The materials/items used need to differ.

Don't just teach your child to wash/load the dishes at home. Let them practice at the neighbor's home, at Grandma's house, etc. The steps of the skill will vary a bit as it is generalized across opportunities, and that's a good thing! There are very few adulting tasks that are done the exact same way, every time. We also know that many Autistics lean towards rigidity and sameness of routine, which can be a good thing or can be highly detrimental to learning if it gets in the way of doing something differently. For example, if the sink, dishwashing liquid brand, or the equipment used (e.g. type of dishwasher) change, can your child still wash the dishes?


It is hard to look at your children when they are young and know with certainty what their future holds. That has nothing to do with Autism, I think any parent would agree with that. Since we don't know what the future will bring, it makes sense to start preparing our children for an uncertain future now.


You may be wondering, "How young is too young to focus on this?". It may surprise you to learn that I start teaching life skills (Adulting 101) with clients as young as 2 or 3. Yup, its true. 

A toddler can learn to clean up their toys. A toddler can learn to put their empty cereal bowl in the sink. A toddler can learn to pour their own juice. A toddler can learn to put dirty clothes in a washer, or pull clean clothes from a dryer. Why not?? If your children are young and you don't know where/how to start with this, just start with teeny-tiny baby steps:

  • Let your child help as you complete household chores.
  • Slow down before leaving the house, and let your child put their own shoes on, or put their own coat on, or grab their own bookbag.
  • Cooking is a life skill. As early as you can, introduce no-heat recipes such as making a sandwich or fruit salad.
  • When in public settings, help your child pay for their own meal, or hand the cashier money for purchases. Let your child place items on the conveyer belt at the grocery store, or teach them to shop by giving them a visual grocery list.
  • Allow older children to have some responsibility for younger children. Let your 6 -year-old help you care for the 1-year-old.

There are SO many resources out there for teaching life skills and increasing adaptive functioning. This doesn't need to be hard or overwhelming! 
Ask your child's therapists for help and ideas, or talk to their school and see if there are any specialized trainings, classes, or programs available for students on the Spectrum. Most school districts have far more programs and community connections than most parents know about.


You got this!



RESOURCES- 



Essential for Living  Assessment Tool





Organization for Autism Research: Transition to Adulthood

The Life Skills Lady

Transition to Adulthood Research Findings


 




As an industry, ABA is a billion dollar market with large, multi-state, companies becoming more and more common in the US. 

There are many reasons for this massive boom, such as the increasing visibility of ABA as a career field, which drives more people to pursue credentialing and certification, and ultimately to seek ABA employment. The insurance mandates across states has also led to this boom, with more and more people now able to access ABA treatment through their insurance plans (removing cost as a barrier to treatment). ABA as an industry has become very attractive to investors and equity firms, which means more businesses and clinics being opened, or existing businesses and clinics expanding and multiplying. Lastly, the increase of ABA services outside of the world of Autism has led to an overall increased demand for/awareness of  BCBAs, with clinicians moving into areas such as criminal justice, the business world, education, geriatrics, and policy change. 

Unless you live in a very small town (or outside of the US) you've probably already seen ABA businesses and clinics pop up in your community, with a more aggressive presence than before.  

As a clinician, it can be a dizzying process to look at the  vast array of ABA employment options out there and choose the best place to pour your time, energy, and talent into, day after day after day. 

This specific question of "Where should I work?" is something I've posted about multiple times (see here, here, or here).


We talk about clinician burnout, we discuss the problematic high turnover rates in this field, but where are the resources to help clinicians weigh their employment options to select a reputable, ethical, and professional organization to work for?


Beyond just tips and commiserating by swapping stories of companies from hell, I'd like to offer some actual evidence- based action steps (see sources below), to help when it comes to scrutinizing an employer pre-hire, successfully navigating The Contract, and enjoying where you work!

What in the world was the point of all those college courses, 2am study sessions, supervision hours, and textbook paper cuts, if you're just going to get up every day to "clock in" at a company you loathe? Why work somewhere where all you are viewed as is a means to billable hours? That makes no sense at all.


Before jumping into some red flags of unethical organizations, I want to emphasize the importance of the pre-hire process. From that initial email or phone call, all the way up to the point where you sign your name on the offer letter or contract, you should be evaluating that employer just as much as they are evaluating you. It should be a mutual process, or dance, of "Show me what you got". For example:

Who owns the company? (super important question to ask these days) How many BCBAs are in leadership positions? How long has the company been around? What is the mission statement or company vision? How about the company culture? How reasonable is the clinical workload? How much of the work day is paid time (billable hours vs non-billable time)? Why did the last person in this position leave? What is the staff turnover rate? How is value demonstrated to employees, in tangible and concrete ways that are NOT tied to meeting productivity quotas? How does the company make diversity and inclusion a necessity, not just at the practitioner level, but at the executive level as well? Is work-life balance a buzz word, or actually attainable at this company? 


Also, we live in the Jetsons age. Your entire life is on the internet. If you think that interviewer is not looking you up before the interview, you are delusional. Have you looked the organization up online? Have you read over the company reviews, written both by consumers and by employees? Have you searched for any lawsuits/legal action, or ethical investigations the company was involved in? You should.



Identifying Unethical Organizations


  • Pre-Interview/Interview process - Organization does not or cannot provide clear, logical answers to persistent applicant questions, supervision and training as described is insufficient/does not meet best practice standards, cannot explain/no process of onboarding new hires, poor management of client health records (HIPAA concerns), scope of competence is not a consideration when staffing cases, both a very brief or a drags on and on interview process are not good signs, beware of recruiters who make grandiose promises during pre-hire (get it in writing), vague or shifting caseload expectations, cannot explain efforts/no efforts made to accommodate the diverse cultures of client population

  • Evidence Based Practices- Organization promotes/advertises or clearly offers non-behavior analytic services while claiming to be an ABA agency, unethical practices or non-evidence based procedures are observed or discussed (e.g. BCBA supervisor implements Floortime with clients), executive level staff lacks BCBA's or clinicians, minimal to no understanding of Behavior Analytic Code of Ethics, clinical competency is not considered or critical to caseload assignments (e.g. brand new RBT's are placed on high intensity cases), clinical supervision and training is too minimal for RBT's to refine their skillset

  • High-Quality Service - Workload expectations are unrealistic to an amount that impacts clinical quality (e.g. Supervisors carrying huge caseloads), clinician mentoring and emotional support is replaced by micromanagement (incessant "check-ins" that are only focused on productivity), job description is unrealistic/multiple jobs crammed into one position, treatment hours are mandated regardless of client need (e.g. push for "40 hours a week" for all clients), "cookie-cutter" treatment planning, lack of parent training/caregiver involvement in treatment, no company policy or procedures for gaining parental adherence to participation guidelines, no company policy or procedures for families who frequently cancel/show up late/"no show-no call", unethical and/or unprofessional behavior is being modeled by senior or executive level employees (e.g. BCBA supervisor is dating his RBT supervisee), ethical conduct is not taught, expected, or maintained by the organization, company online presence/website is heavy on outdated, Ableist, or anti-Autistic language such as "cure", "recovery", "suffering with Autism", or "saving" children

  • Non-Certified Supervisors or Owner - While not automatically a red flag, the supervisor/owner must be knowledge of the Code of Ethics, must understand that credentialed and certified employees are required to practice ethically, must demonstrate understanding of appropriate clinical caseloads, clinical supervision, and clinical training, must be committed to clinicians practicing within competency,  and must not attempt to make clinical/treatment decisions due to not being qualified to do so

  • Contract Terms - Offer letter or contract contains terms, restrictions, or information never previously mentioned or explained during pre-hire (e.g. "surprises" in the contract), information that was verbally stated is not put in writing/not in the offer letter or contract, highly restrictive and punitive non-compete or non-solicitation clauses that prohibits the employee from reasonably working in the field during, or post-employment, length of employment conditions that require the employee agree to work at the organization for a specific amount of time ("handcuffing" employees to the organization), requirement to sign any document after accepting the position (e.g. 10 days after signing offer letter, only then is employee asked to also sign a non-compete agreement), huge bonuses/perks/incentives that only kick in after a specific duration of employment (indicates the company has high turnover rates), being offered an independent contractor position if you are a RBT or BCaBA (you cannot work independently)

**References:


BHCOE Position Statement on Non-Compete Agreements


Brodhead, M. T., & Higbee, T. S. (2012). Teaching and maintaining ethical behavior in a professional organization. Behavior analysis in practice5(2), 82–88. 


Brodhead, M. T., Quigley, S. P., & Cox, D. J. (2018). How to Identify Ethical Practices in Organizations Prior to Employment. Behavior analysis in practice11(2), 165–173. 


Brown, K.J., Flora, S.R. & Brown, M.K. Noncompete Clauses in Applied Behavior Analysis: A Prevalence and Practice Impact Survey. Behav Analysis Practice 13, 924–938 (2020). 


Kazemi, E., Shapiro, M., & Kavner, A. (2015). Predictors of intention to turnover in behavior technicians working with individuals with autism spectrum disorder. Research in Autism Spectrum Disorders, 17, 106–115. 


Rubenstein, A. L., Kammeyer-Mueller, J. D., Wang, M., & Thundiyil, T. G. (2018). “Embedded” at hire? Predicting the voluntary and involuntary turnover of new employees. Journal of Organizational Behavior, 40, 342–359. 

 Yup, pretty accurate.




Need more tips? Well, if you want a surefire way to generate clinician burnout, be sure to hire highly qualified, intelligent, and experienced practitioners, and then micromanage them to death.

Lather, rinse, repeat.


 *Recommended reading: What to expect from a BCBA



If you are unfamiliar with ABA services, you may first hear about it as a recommendation post-diagnosis. Or, from a school system recommending behavioral services. Or, you might seek out an ABA provider if persistent, challenging, or harmful behaviors are happening in your home, in the community, or at your child' school.


For most people, the process of starting up ABA services will involve multiple steps, an extensive timeline, and lots & lots of paperwork (seriously.... a mountain of paperwork). To briefly summarize, the child must be diagnosed, an ABA provider must be found/identified, an intake assessment must occur, insurance authorization has to happen, staff must be assigned to the case, and only then do services actually begin. I would say a best case scenario would be all of that occurring within 1-2 months. Unfortunately though, best case scenarios don't always happen.


Just like there are valid, honest reasons why ABA therapy isn't for everyone, there are valid reasons why starting services with the ABA agency/clinic up the street isn't the best idea. Sometimes it will make much more sense to work with a solo practitioner/BCBA.

If you aren't familiar with the title BCBA, a Board-Certified Behavior Analyst is someone trained in the science of Behavior Analysis, holding a Masters degree or higher, who has gone through roughly 1-2 years of highly regimented supervised experience and passed a rigorous exam. BCBAs can practice independently, so this means you do not need to go through a company or agency to work with one. Similar to physicians, BCBAs have specialties. All BCBAs will possess a standard skillset/range of knowledge on behavior, but the specialty will be a combination of an individuals post-certification experiences and training. For example, some BCBAs specialize in feeding disorders. Others have worked with early intervention populations exclusively, and others focus more on OBM (Organizational Behavior Management) rather than special needs populations. 


For most families, it seems like a simple equation: need ABA services ---> call up a local company ----> start services. But, there are some scenarios where this would actually be a bad idea:


  • Brief or Short Term Consultation - Most ABA companies are focused on servicing clients needing intensive, multi-year therapy for many hours each week. If you have a specific behavioral need or only need short term help, it actually would be faster, and simpler, to just work directly with a solo BCBA.  And on that note, lets talk about speed of services starting up....

  • Delay to Onset of Services - I regularly talk to families who are sitting on wait lists to access services. Or, their child completed an initial assessment with a company, but they haven't heard anything for 30, 60, days and counting. There could be many reasons why you experience a significant delay to start services, but the most common reasons would be staffing (no available staff), and funding issues (problems with getting services authorized or company is not in network with your insurance provider). If you need help now, I strongly suggest contacting a solo BCBA rather than a company/agency.

  • Wanting Highly Experienced Staff - As part of my role, I regularly conduct intake assessments with families new to ABA. Many times they will ask me if I will be the one working directly with their child, and I then explain that ABA treatment utilizes a tiered-service delivery model. In a tiered model, the supervisor/BCBA is usually the most degreed and experienced person on that case. The individual working directly with the client, is usually called an ABA Therapist, or Registered Behavior Technician (if they are credentialed). The education and experience of the direct staff can vary, and a high-quality company will have a rigorous training and onboarding process for direct staff before they can work with clients (a poor quality company will not). If you want Masters degree level clinicians working with your child, that can be hard to find at a company. 

  • Rural/International/Low Supply Area - I have worked privately with families as a Consultant for many years. The main reason why these families chose to hire me instead of going to a company/agency, is because in this was not an option for their area. Some of these families lived in very rural areas with no ABA providers for miles. Others lived outside of the US, where knowledge of ABA can be minimal or absent. For others, there were TONS of ABA companies in their area. The problem with that though, is that high demand can = insane wait lists. I'm talking sitting on a wait list for 1-3 years. In these situations, it makes far more sense to work with a solo BCBA via Telehealth/technology. I do not recommend sitting on a wait list for any significant length of time without also pursuing other options.

  • No Diagnosis/Non-ASD Diagnosis - In most states that have Autism mandates for insurance coverage, a diagnosis of Autism is required to receive ABA treatment. If your child is not diagnosed, you're stuck on a wait list just to get a diagnosis (which can happen), or your child has a non-Autism diagnosis, then you may not be able to receive services from an ABA company. Not all companies accept private pay clients, especially the very large ones. In this situation, it would make more sense work with a solo BCBA.

  • Funding Issues/Insurance Issues - Similar to the above point, there can be challenges with accessing ABA therapy through your insurance. For some, a high annual deductible must be met before insurance will kick in. Or, per session co-pays might be very high (keep in mind there will be multiple sessions per week). Sometimes the insurance may cover an amount of ABA that is very minimal, or does not allow for quality supervision of treatment. I have worked with families  where due to their specific insurance plan, I could only see them once a month. That is not enough for high-quality services. 

  • Language Barriers - If you live in an area where that predominate language is not your first language, you may experience a barrier to accessing treatment. For example, many families in Atlanta speak Chinese or Spanish as their first language. But not all ABA companies in Atlanta have Chinese or Spanish speaking staff, or translators available. So what does this mean? It means it can be challenging to initiate services, participate in assessment, and understand what is going on in therapy. If this is your situation, you may want to find a solo BCBA who speaks your first language for ease of understanding and communication. Another bonus is this BCBA would be able to provide translated documents and paperwork to you, in your dominant language.

  • Professional seeking Consultation - Lastly, what if you are not a parent seeking services for your child, but rather a related professional who wants to collaborate with a BCBA? Maybe you are a teacher, SLP, Psychologist, or PT, and you have a particular client/student with challenging behaviors and need some help. This is not a scenario that would be appropriate for calling up an ABA company. It would be far more feasible (and faster) to locate a BCBA and ask about individual consultation. Keep in mind that ethically, the caregivers of the specific client must consent to this consultation as well.



There will be exceptions to all of the points above, depending on the area where you reside, the funding sources available, the quality of local providers, and your specific behavioral needs. 
For example, it is often more difficult for parents of older children or adults to access services. Also, not all agencies accept all insurances. Or maybe your current ABA provider seems to have a revolving door of staff, and just when you acclimate to the team members: they change. These are all scenarios where you may want to consider private consultation.

Just keep in mind that if services in your area are lacking, full of impossible waitlists, or if you have funding challenges, you do have other options available to receive ABA intervention for your child.



*Resources:





 *Recommended Reading: ABA Haters 


I feel very unqualified to write this post.


The ABA Reform movement (also referred to as Autistic Activists & Allies) is not new, but you may be unaware of it. Many ABA peeps are. 

There's a vocal community of Autistics and pro-neurodiversity/anti-ABA parents, individuals, and professionals who work diligently to spread the word about their viewpoint of ABA. Sometimes this is due to actual experience with ABA therapy, but not always. 


If you want to understand why an Autistic dislikes ABA therapy, obviously the best person to ask would be an #ActuallyAutistic.

However, there are a couple of reasons why I am writing this post anyway, despite feeling unqualified to do so:

1. Lots and lots of parents come to my blog as a source of information about ABA. I don't want my silence on this topic to make it seem like I think ABA is perfect with no flaws. I do think this industry has flaws, and I think parents making treatment decisions for their child need to know that.

2. Although there are some in the ABA Reform movement who are pushing more for "eradication" and less for "reform", I think ABA professionals should be a part of this conversation. We are the ones in the field, day in and day out, working with vulnerable populations who don't always have a voice (either figuratively or literally). We cannot just stand by and watch this conversation happen, we need to join the conversation.


If you think ABA, as a treatment or as an industry, is perfection and needs no improvement, you may want to stop reading now. <------------------------------------------


If however, you see the field's issues with clinician burnout, inefficient staff training, low-quality employers, person-first treatment planning, questionable research, teaching Autistics to mask, or respecting client dignity, and want to be a part of the CHANGE for the better, then read on.


My 1st post on anti-ABA'ers, or "ABA Haters" was written quite a few years ago. I keep it up (even though my views have since changed) because I think it's important to see the evolution of change.

Most of us do not change our minds about something instantly. It is a process. We receive new information, analyze that information, reject it and return to old thinking, or accept it and enter into a different level of understanding. Of course, I'm also minimizing the reality of defensive mechanisms, circular logic, and cognitive dissonance, and how these concepts impact our ability to change our mind.

I used to think people were anti-ABA because they had never experienced quality ABA services. I thought if they could see for themselves what ABA can do, how it can help, and how we impact lives everyday, that anti-ABA'ers would "come around".

I have since changed my mind on that.

For those of you that don't know, receiving low-quality/unethical ABA treatment is not the only reason why someone may hate ABA. 

Other reasons could include: being against the idea of "treatment" for a neurological difference, seeing Autism as a cultural identity and not a problem to solve, being against the high intensity of ABA services, taking issue with the tiered service-delivery model ABA uses, viewing the origins of ABA as unethical and inhumane, viewing the current state of ABA as unethical and inhumane, and strong displeasure with the lack of Autistic voices/input in the top Autism advocacy organizations, Behavior Certification Board for Behavior Analysis, leadership/ownership of ABA agencies and companies, and leadership in ABA state associations.

These are valid points, and they deserved to be heard without the lens of professional defensiveness.


Again, there are some in the ABA Reform community who think the best way to fix ABA is to 

Shut. 

It. 

Down.


But there are others who do want to see ABA improved, implemented more compassionately, and become more receptive to Autistic feedback and experiences. More about support and accommodations, and less about trying to change/fix someone.


Below are a ton of great resources for more information about Autistic voices, differing views on ABA, and anti-Ableism advocacy. The best consumer is an informed consumer, and I think it's important to present the information and let people decide what is best for them.


Whether you are a parent, caregiver, or ABA professional, it is so important to be aware of what the main population served by ABA (*It is true that not all ABA professionals work within the Autism community, but a gigantic chunk of us do*) has to say about ABA therapy, and the ways it can improve.


If you aren't willing to at least non-defensively listen, then what you're really saying is you aren't willing to change your mind



*Resources- 

Do Better Professional Movement 

The Great Big ABA Opposition List

Autistic Self-Advocacy Network 

BCBAs + Autistics Towards a Reformed ABA Facebook group

ABA Reform Facebook page

Beautiful Humans Podcast: The ABA Reform Movement Ep. 26

A Perspective on Today's ABA from Dr. Greg Hanley

5 Important Reasons Even "New ABA" is Problematic 

The Controversy Around ABA

Stimming Deserves Acceptance 

Nice Lady Therapists 

"I Am a Disillusioned BCBA" 

ABA Inside Track Podcast: Trauma Informed Care Ep 134 

Behavioral Observations Podcast: What is Trauma Informed ABA Ep 131

What's Wrong with the Autism 'Puzzle Piece' Symbol

"Why Autism Speaks Doesn't Speak for Me"

Avoiding Ableist Language: Suggestions for Autism Researchers 

"Why Autism ABA Goes Against Everything B.F. Skinner Believed In"

Eye Contact for Recipients Validation

"Autism Doesn't Have to be Viewed as a Disability"

"How To Ask an Autistic"



 


*Recommended Resources:

Helping your ASD child cope with COVID

Strategies for supporting learning at home

Homeschooling special needs children

Mastering Homeschooling

Podcast Episode: "Take Off the Cape"


During this global pandemic, schools have been as impacted as everyone else when it comes to figuring out a New Normal. 

The most recent stats indicate that globally, there are 1.2 billion children learning outside of the classroom due to school closures (source: We Forum) . E-learning has increased dramatically, with parents and caregivers now finding themselves thrust into the role of "Home Education Assistant".  

I have multiple clients who are learning at home this year, and both the parents and the children are struggling to adjust to this unanticipated change. 


For the children, it may be hard to understand why they aren't at school, why the regular routine has been so disrupted, and why they have to sit and learn at a computer all of a sudden.

For the parents, this is an added stressor during an already challenging year, it is hard to navigate a school at home schedule while also working from home (or returning to work on-site), and for parents of ASD children there are added unique challenges to help the child benefit from online learning.


Very few of the clients I serve are able to sit and learn through a device/computer screen for an entire school day. That just isn't happening. So what we are doing instead is helping the caregivers in the home learn how best to support their child's school day with this new format. Especially since none of us really know for sure when schools will be "back to normal".


Below are some tips I share with my client families, I hope they are helpful for you and your children:


  • Tip #1 is THE MOST important tip: Talk to your treatment team. By "treatment team", I mean the ABA team/case BCBA, Speech Therapist, Teacher, Counselor, etc. The best person to ask about your child's learning is a professional who already knows and works with your child. Seriously, I have had so many meetings this year with client teachers, and the teachers were all so understanding, accommodating, and willing to work together, because this year is hard for all of us. You will have no idea how much the online school day can be modified until you ask.

  • A daily schedule will be your BFF. It will be nearly impossible to adjust to the demands of school at home without a consistent schedule in place. Create a schedule based on when your child needs to log-on/be active in class vs. when they can work on assignments off-screen/off-camera. Be sure to include breaks (Pleeeeeease don't expect your child to sit at a computer screen all day with 0 breaks. That won't end well), meal times, reinforcement time/play, and calming or sensory activities as needed. Just like the rest of us, your child is probably highly stressed from the challenges of 2020. Though they may be unable to communicate that, just depending on ability level.

  • Seek help if you are physically unable to supervise your child's online learning. I have some client families where both parents are working from home right now. It is tough, but they are able to adjust their day so at least one parent is always monitoring the child's learning. I have other client families where this is not at all possible. Every household is different. Consider having a neighbor, grandparent, older sibling, or family friend monitor your child during the school day. For some families, "monitoring" may be all that is needed. For other families, see the next tip.....

  • DO understand that for some children, sitting at a laptop and attending for more than a few seconds at a time will not be possible. It won't. You are not a bad parent if this is the case. You have not failed, and you should not beat yourself up. This simply means your child will need a high level of support to benefit from schooling at home. I have some clients in this scenario, and it does mean that an adult must sit with the child and help them participate in online school. But guess what? For these types of kids, a 6- hour school day is not the goal. A 4- hour school day isn't even the goal. We work on helping the child participate as much as possible, and then we take breaks. Then we try some more. Then we take breaks....get the picture? Which leads me to my last tip....

  • Let's get real. And I mean, really real. We are in the midst of a pandemic. Families are struggling mentally, emotionally, financially, etc. Your child with ASD may not understand what is going on, and why all of a sudden you are acting like a teacher. Stress levels, anxiety, and depression, are sky-high for many people. You have to assess your capacity as a parent to do school at home. It truly is not for everyone. And that's OK! Please re-read tip #1. Talk to the school. Talk to your child's teacher. Explain your situation, and discuss the barriers to teaching your child at home. See what strategies or modifications the school can make. You might be surprised how many options you have that you just don't know about. You are not Superman or Superwoman, and are under no requirement to be perfect. Do the best you can, in the surreal circumstances we all find ourselves in right now. Best of luck to you!


 Hiring Managers, Clinical Directors, or anyone in the position to recruit and hire ABA staff:


Everyone wants that Type-A, super ambitious clinician, but what happens when the overachiever hits the wall at 90mph?? What impact will that have on client outcomes?





 "You are not Superman, and you are not Superwoman. Take off the cape."

Tameika Meadows 


Today's QOTD is from an amazing podcast I had the privilege to join: "Shifting Perspectives", hosted by Yolande Robinson.


During the insanity that has been 2020, parents of Autistic children, teens, and adults, have had to repeatedly pivot and navigate new situations when it comes to lack of supports, no access to community providers, increased unemployment, schools or colleges shut down, homeschooling nightmares, increased anxiety, increased depression, and on and on. 

We have all been impacted by this pandemic and global turmoil, but for families raising special needs children there are unique issues and factors that come with the territory. 

What is needed now is encouragement, support, practical strategies, and a reminder that no one should be trying to "do it all" right now. That just isn't possible. Focus on what can be changed and improved, and learn to adapt to what cannot.


Podcast episode link:  Episode 19  "Take off the Cape"









 


*If you need some context to why this is such an important topic to discuss, please see any of the links below:

https://www.salon.com/2020/07/06/young-black-autistic-and-imprisoned-matthew-rushins-story-is-sadly-not-unique/

https://www.bbc.com/news/world-us-canada-36859305

https://www.nbcnews.com/news/us-news/north-miami-officer-who-shot-unarmed-caregiver-man-autism-found-n1018616

https://www.miamiherald.com/news/local/article236523038.html

https://www.washingtonpost.com/local/remember-neli-latson-the-black-teen-with-autism-who-seemed-suspicious-sitting-outside-a-library-ten-years-after-his-arrest-he-still-isnt-fully-free/2020/06/10/53565cec-ab39-11ea-a9d9-a81c1a491c52_story.html

https://www.npr.org/sections/codeswitch/2014/08/23/342688183/for-parents-of-young-black-men-with-autism-extra-fear-about-police

https://www.spectrumnews.org/features/deep-dive/police-need-training-interact-people-spectrum/


According to a 2017 study (Drexel, Autism Institute), about 1 in 5 Autistic teens will be stopped and questioned by a police officer before they are 21 years old.

The Matthew Rushin story is one of horrible injustice and tragedy, and reveals a concerning urgency to  prepare brown and black Autistic children, teens, and adults, for police interaction. Sadly, this isn't as simple as holding up the smiling photo of the community helper and saying "Point to the police officer". No, that really isn't going to cut it.

Just like teaching any other skill, a great starting place would be to set a terminal goal. Is the goal for the individual to remain calm if stopped by the police? To answer questions respectfully? To be able to explain their diagnosis, and any behaviors that an officer might deem "suspicious"? Is the goal to avoid engaging in behaviors that may attract police attention (although realistically, how pragmatic is this?)? What would the terminal goal look like, and then once that goal has been identified-- work backwards.

It is also important to teach at the ability level of the individual, understanding that language, cognitive, or social impairments may mean visual supports are helpful, practice/role play is helpful, and other evidence based strategies such as video modeling may be needed. For some individuals who require daily supervision and support, perhaps it is unlikely they will encounter a police offer without an adult/teacher/parent present. In that case, maybe staying calm, keeping hands visible, and not walking off would be appropriate behaviors to increase. 

For other individuals who do not require daily supervision, live alone, and have independence, police interaction training may need to be much more in-depth and sophisticated as a known adult/caregiver likely won't be present. In this instance, self-advocacy and the ability to stay still and calm while being questioned would be important.

What I see of the most importance, however, is not skipping this conversation. Will it be pleasant? No. Police brutality is not a pleasant thing to talk about. Will it be easy? No. Most non-Autistic people don't understand police brutality, and I'd imagine that it's no different for Autistics. Will it make police seem fearful or scary? Possibly. But we also teach individuals street safety, kitchen safety, water/pool safety, etc. I see this as being a similar skill. Police are a part of our society, and it is unrealistic to expect certain populations within our society to have a magical 'free pass' from potential unpleasant police interaction.

If your child or client was outside unsupervised and an officer walked up and said "Tell me your name", what would happen? What about if they got pulled over by a police officer while driving? Or needed to approach a police officer to request help, or ask for directions?

When I think about this issue, I think about particular black and brown clients I've worked with as an ABA provider:

-A teen who tends to invade personal space and talk very closely to people's faces. 

-Another teen who shouts and hops up and down when he is confused or agitated.

-A child (She looks like a teen, but she's not. She's only 9) who covers her ears when agitated and stops talking.

-Multiple children who have full body repetitive movements where they may excitedly pace, run back and forth, or flail their arms out. 

If I try to imagine any of them in a scenario with a police officer, I am unclear how their mannerisms would be interpreted ..... as aggression? disrespect? Does that officer know what Autism is? Might the officer incorrectly assume drug or alcohol use, instead of "Developmental Disability"? I really don't know. 

And it is exactly because we don't know how the police interaction might be misconstrued, that we need to prepare our clients, students, and loved ones/children as best we can.

Ultimately, injustice is hard to predict. But as parents, educators, ABA providers, etc., while we cannot predict future negative police interaction, we can do what we can to prepare for that possibility. At least start with a conversation, and helping your child/client distinguish between typical police behavior and when they are being violated, harmed, or are in danger. 



**Resources (please share!) **

'Correlates of Police Involvement among Adolescents and Adults with ASD'

'An Exploration of Law Enforcement Training Needs with ASD'

'Using Virtual Reality to Train Police Interaction

"Meet the Police" A National Autism Association Safety Initiative 

'Autism, Law Enforcement, & First Responder Training

'Behavioral Issues Boost Risk of Police Run-Ins'

Autism in Black organization

The Color of Autism Foundation

Mapping Police Violence website

Black Autistic Lives Matter






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
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