Lessons Learned, Lessons Shared:
An Interview with Dr. Sabrina Freeman, Parent, Author, and Advocate
Conducted by David Celiberti, PhD, BCBA-D
David: Thank you for the opportunity to interview you about your experiences and the many lessons that you have learned parenting a child with autism over the years. I want to let our readers know that you are replying to my questions as an individual and that your view does not necessarily represent the views of our board. Having said that, I am looking forward to this interview as I know that your responses will be direct and unfiltered, yet thought provoking and insightful.
First and foremost, can you tell our readers a bit about you and your family?
Sabrina: I’m happily married with two children. I have a typically developing 18-year-old son, and an adult daughter with autism, both of whom live with us. We live in a small university town in the Pacific Northwest 30 miles south of the Canadian border. We moved from Canada to the USA in 2009. My responsibilities as a member of the adjunct faculty include teaching courses on research methods and organizations for the Department of Sociology.
David: Please describe your daughter’s journey to diagnosis and ultimately to early intervention and some of the lessons you learned early on.
Sabrina: My 27-year journey has taught me many lessons that I’m happy to share with our readers. I was basically minding my own business, pursuing my doctoral degree at Stanford University, when my young child was diagnosed with autism. The diagnosis was confirmed one week before my first comprehensive exam. I had attended a Mommy and Me pro-gram with her and was blocked from enrolling her into a community center preschool at 3 years of age.
The preschool teacher told me that my daughter should be in a special needs classroom because some-thing was wrong. Since this was my first-born child, and I was never one to compare developmental differences in children since I was a firm believer that children develop at different rates, I was quite shocked about this discrimination against my child. How, you may ask, do they discriminate against a three-year-old? Well, it’s simple: they create a rule stipulating that a child who is not toilet-trained is not allowed into the program. That way, they can segregate a child without looking like it’s discrimination based on disability. This technique may be used to block all children with special needs because it is unlikely they will be toilet-trained by 3 years of age.
Lesson No. 1: If your child is being blocked from a program, the rationale may look legitimate; however, chances are, they simply may not want your child.
At this point you have a choice: either challenge them by throwing financial resources at them and fight, or find a community or program more worthy of your child’s participation. I put my child in the university preschool program where they were smart enough to avoid using that criterion to exclude children with special needs.
After the preschool teacher delivered the bombshell about my child in an off-handed manner, the so-called experts in the community gave me the best place to get my child evaluated. The place they recommended had considerable prestige associated with it, but the clinicians were actually completely incompetent when it came to autism treatment options. The diagnostic team was acceptable, but larded down with professionals who have no role in diagnosis, such as social workers and occupational therapists. Although the multidisciplinary team made the diagnosis, we had to pay for the entire cast of characters! Unfortunately, they were wholly lacking in expertise when it came to advice on effective autism treatment. You have to remember that the year was 1991, and there was little quality research available on science-based interventions for autism. However, in 1987, Lovaas’ first study was published; the psychiatrist in my daughter’s evaluation team should have known about that treatment. Instead, he suggested play therapy that he was “qualified” to do with my daughter. Consequently, I spent four months and a considerable amount of money watching a psychiatrist crawl around the floor as my daughter completely ignored him. My most vivid memory of the play therapy sessions came when, after many sessions, my child tired of the psychiatrist attempting to join her in her self-stimulatory behavior. She took his hand and, using it as a tool, lead him to the doorknob and had him open the door. He dutifully opened the door and she pushed him out of the room. After months of play therapy, he actually saw this as a breakthrough! I had started doing research on my own regarding play therapy, and realized that there was no science behind the method. The studies that had been conducted were uncontrolled case studies, anecdotal in nature and completely unscientific in orientation. In short, play therapy was a waste of my daughter’s time and my money.
Lesson No. 2: Credential does not guarantee competence.
That a professional has a PhD behind his name and is a fellow at a prestigious university does not mean he is competent and knowledgeable. In short, demand to see the data supporting the interventions being implemented. Do not rely solely on professional opinion. Make sure that the professional is, indeed, knowledgeable about the state of the science in autism treatment and that he or she can produce peer-reviewed journal articles regarding the technique he or she recommends.
In 1991, the World Wide Web was not broadly avail-able to the public; however, I had access to Medline and started to search there. I actually came across Lovaas’ landmark autism treatment study but did not understand how to gain access to the treatment for my daughter. The treatment looked like it was still in the lab and not available to anyone outside of the Los Angeles area. The fact that my daughter was not toilet-trained actually saved her future. I asked the psychiatrist if he knew anyone who could help toilet-train her. He gave me the name of a woman who could do this. By this time, I was very jaded and felt hopeless (although thinking back, perhaps he knew that his treatment was quackery and steered me to-wards the treatment that worked without jeopardizing his position – we’ll never know).
I phoned the woman the psychiatrist had recommended. She happened to be an incredibly talented behavioral consultant who had worked with Ivar Lovaas as an undergraduate student and knew his IBT protocol intimately. I was actually very terse with her when I asked, “Can you toilet-train my child?” She said, “Yes, I can, but I can do a lot more.” At this point, I highly doubted that this was the case because I’d just spent four months seeing incompetence up close with play therapy. We arranged a time to meet, and this tall, gorgeous woman with long painted fingernails walked into our home with a big plastic crate full of kiddy toys. She sat on the floor of our living room and I offered her coffee. She politely declined, clearly ready to work. My child ran out into the living room and gave a fleeting glance toward this woman, at which point she said, “Good looking!” I thought to myself, “who cares?” that my child is cute. She has autism and needs to be toilet-trained! I did not under-stand that the consultant was using praise; behavior-ally reinforcing my child’s glance. Then she pulled out a toy that hurled pieces high into the air with the push of a button. My daughter was intrigued. After considerable prompting and back and forth, my daughter said the first words of her life: “Push Please.” My spouse and I almost fainted! Our 3-year-old just spoke her first words! At that point, I under-stood that the very technique published in 1987 by Lovaas, was being used in my living room in Palo Alto. I quickly realized that I needed to do a lot more reading on how to set up and maintain an IBT pro-gram. In one session, my daughter had learned more than in 4 months of play therapy (which ended that afternoon by phone)! I immediately arranged for this professional to begin work with my daughter.
Lesson No. 3: Judge a consultant by the progress your child makes, not by his/her credential or fashion sense.
David: Thank you for sharing that. Your story is an all too familiar one, particularly with your experience contrasting behavior analytic treatment with the more traditional psychodynamic treatments that were prevalent at that time. What role did you play in your daughter’s intervention as well as in promoting the generalization of skills? How has that role changed over the years?
Sabrina: Once I realized that a treatment able to maximize my child’s potential existed, I very quickly became a student of the technique. I personally watched every therapy session for years, until I understood the field of applied behavior analysis (ABA) when applied to intensive behavioral autism treatment. I consider Lovaas’ genius as taking the principles of ABA, the field of developmental psychology and psychopathology, and applying these principles intensively to children with autism. At the time, however, I had never even heard of ABA. I only knew about the research that had come out of UCLA under Lovaas. As I read more about the treatment method, I realized that the science demonstrates that intensity is key. Even great interventionists cannot develop the child’s full potential without the appropriate intensity of the treatment. The literature is very clear about this point. Consequently, we had to ramp up treatment hours to make it intensive. I became my child’s treatment team case manager, hired a team of therapists and made sure they received high quality training. Luckily, my consultant lived in town and was able to take on a central role in assuring therapist quality. Once I felt comfortable with the competence of the therapists, I was able to leave during therapy sessions. Although I had a very competent team, as a first-time mother, I was extremely over-protective. Also, it took me some time to embrace behaviorism because I was dispositionally anti-behavioral prior to my child’s diagnosis. I came from a very child-centered, child-led philosophy vis-à-vis child-rearing, which may be effective for typically developing children; however, I learned that allowing a child with autism to lead will impair development, despite how much we want to reject that notion. In short, I had to become open-minded very quickly. That said, once I truly understood how behavioral treatment was implemented, I embraced the technique wholeheartedly.
Even when the therapists left for the day, my husband and I had to follow through with behavioral techniques. To illustrate, all the language gains, self-help routines, and overall development did not generalize without our follow-through. If the child cannot get needs met outside of a therapy session, then the child has not actually gained the skill. The follow-through was very difficult for us at the beginning; however, we eventually adopted ABA as a lifestyle, not some-thing done from 9 to 5. When I meet experts in the field, I remind them that they may do this for a living, but we parents live ABA, or in the words of a friend of mine who has a son with autism, “We’re living La Vida Lovaas.” Unfortunately, if you want your child’s progress to continue unabated, you need to follow through 24/7. This lifestyle is hard, but does become easier over time.
Lesson No. 4: Adopt ABA as a lifestyle and your child will keep learning. There is no end to the progress your child will make.
Due to the behavioral techniques used with my child during all her waking hours, we managed to advocate for her to receive the same opportunities as typically developing children. That was very difficult because at the time, we were living in Canada, which is a country with no federal legal protections for people with disabilities (unfortunately, the Canadian Constitution does not do the job). Canada has no Americans with Disabilities Act (ADA), no Individuals with Dis-abilities Education Act (IDEA), and no Mental Health Parity Act (MHPA) to protect disabled children from government discrimination; therefore, the advocacy was much more difficult for us. I think it is accurate to say that Canada helped me tremendously in my metamorphosis from a mild mannered person to becoming a Mother From H*ll. I cannot stress enough how important it is to be indifferent as to whether school bureaucrats like you or not. If you need friends, do not look for them in the school system. That may actually impede your ability to advocate.
Lesson No. 5: When advocating for your child, school staff members don’t have to like you. They have to respect and, perhaps, fear you.
My child was accompanied through her education with a trained ABA aide and attended a two-year college program with an aide as well. That would never have happened without having lawyers on speed-dial. Unfortunately, the system is very good at out-maneuvering parents. Lawyers are crucial to even the playing field. The key is to write down every interaction with every school official, from the teacher, the resource specialist, the principal, and vice-principal to the district-level bureaucrats. Keep a journal by your phone and in your car. That will make it easier for your lawyers to make a cogent case in front of a judge if the need should ever arise.
Lesson No. 6: When advocating for your child, if you are in a school district that is not cooperating, have a lawyer in the background.
David: Thank you for describing the role you played, particularly with respect to the lifestyle changes that you and your husband needed to make. What is your daughter is doing now? And how is she supported?
Sabrina: From an early age, my daughter lived in a world where music occupied every waking moment. Although this sounds quaint, the incessant singing made it impossible to go into any public place, including restaurants, libraries, bookstores, or movie theaters. Although she had a repertoire of hundreds of songs that she sang with perfect pitch in several different languages (including Japanese and He-brew), it was clearly perseverative behavior. I re-member standing in a bookstore in Palo Alto, California with my two-year-old daughter in my arms singing and the student behind me made a comment that this was extraordinary since children this age do not sing so well! Little did I know that, indeed, it was extraordinary, but not in the way we thought. Once she started her IBT program, we also started working on channeling her love of music into socially acceptable venues so that she could participate with others in making music, learn when to sing and when to be quiet. This work on her strengths allowed her to at-tend a fine arts high school as a double music major and eventually attain her associate degree in music at the local community college. Although she is a talented musician who plays many instruments well, her competitive advantage in life is her ability to transcribe music. Today, our daughter works as a musical transcriber, transcribing original works from composers around the world. Composers send her full symphonies as mp3s and she manually transcribes each of the 18 to 30 instruments into notation software so that each musician can receive the score for their specific instrument and the conductor receives a score with all the instruments included. She is able to do this be-cause she has perfect pitch and the musical education required to know how to communicate the rules of music to the musicians. She also has many clients who are budding musicians who do not know how to take their songs and notate them. Her website and public freelancing websites bring in the business. She does the work and I interface with and invoice her clients, since it would be very difficult for her to do so.
Lesson No. 7: When looking at your child’s future, think about what gives the child joy, and then work on a way to develop the skill for integration opportunities. On occasion, these skills may be applied to earning money and participating in the economy.
David: It sounds as if this has been a full-time role in and of itself, yet somehow you managed it, while continuing to pursue your career and author a number of books related to autism treatment. What led you in this direction and what were your goals when publishing these works?
Sabrina: As you can well imagine from what I just described, I was so outraged about the purgatory parents of children with autism have to go through just to get their child the help they need, that I had to do something! I’m a firm believer in the Pay It Forward philosophy; since people helped me, and I had so much knowledge to share to prevent heartbreak, I re-ally felt that I had to write these books. I knew that the difficult lessons I learned would be of value to help parents of children with autism advocate for their children, and to teach the important language skills parents are desperate to have for their kids.
As a sociologist, I also knew too much about the scientific method to ignore pervasive quackery in the world of autism treatment. The books I wrote are a way to push back against bureaucrats and give parents important knowledge. The first book I co-wrote was, Teach Me Language that used the principles of ABA to improve language skills once children had reached a level where they could be integrated into the school system or were very successful in EIBT programs but needed more work to prepare them for school. The next book I wrote, Science for Sale in the Autism Wars, documented the tremendous advocacy effort by a large group of parents who took the Brit-ish Columbia Government to court (all the way to the Supreme Court of Canada) to fight for the rights of children with autism to be part of the single-payer health care system in Canada. Many of your readers may be surprised to know that IBT is not included in the healthcare system in Canada. The book documents the way government-paid technocrats created junk science to exclude our children with autism from the system for their core health need. At the same time, I was spending hours and hours every day speaking to parents about how to create a behavioral treatment program for their children. This was taking up so much of my time that I could not work! So I created a video/DVD called, Autism: Now What Do I Do? Families for Early Autism Treatment of B.C. (FEATBC), established in 1997 when I moved back to Canada, would send new parents a complementary video and parent packet. When parents called back, the phone calls were much shorter and more efficient. Although this was more efficient, while speaking to literally 1000s of parents I kept having to explain to them the problem with quackery in autism treatment. I quickly understood that I needed to write another book to teach them about science-based treatment for autism. That book is called The Complete Guide to Autism Treatments and is an attempt to make parents savvy consumers. This latest book does the following: 1) describes the science (or lack of science) be-hind the various treatments presented as ameliorating autism; and 2) educates parents on the rules of the scientific method so that they can protect their child against the newest selection of bogus autism treatments introduced into the lucrative marketplace.
Lesson No. 8: If you have knowledge to help the next parent coming down the pike, help that parent and Pay It Forward.
David: It is unfortunate that you and others have had to work so hard to debunk quackery when the onus should be on treatment proponents to provide legitimate data to substantiate their claims. Nonetheless, I applaud you for taking the time to author so many incredible resources. In fact, I had the opportunity to review The Complete Guide to Autism Treatments, which is how we initially met (readers can find the review of the second edition here). What lessons should advocates of scientifically validated treatments of autism learn from the resilience of pseudoscientific treatments?
Sabrina: In the early 1990s, quackery in autism treatment was alive and well; however, there was no efficient way for quacks to advertise. The way people learned about the latest snake oil for autism was through travelling roadshows and word of mouth. Someone would invite a speaker who would provide testimonials and pamphlets, but it was not efficient. The Internet changed all that. Now, a slick website with testimonials can hoodwink a desperate parent very easily. In addition, social media amplifies the ability for quackery to prevail. Unfortunately, dry, boring, peer-reviewed journals cannot compete with slick marketing. In addition, testimonials are actually anti-science, which makes it uncomfortable for those who practice the scientific method to showcase an effective treatment by having a parent talk about how well their child did even though there is an army of parents who can personally describe their child’s progress.
Furthermore, not only are purveyors of fringe treatments utilizing the Internet to sell their latest quackery, there are also legitimate fields of inquiry, such as the Speech and Language and Occupational Therapy fields, that are providing purported treatments for parents of children with autism, yet their studies never compare techniques to best practices in behavioral treatment. In the same way as a new antibiotic must be compared to the best old antibiotic in order to be considered equal or superior, so must any new autism treatment be compared to behavioral treatment to judge its relative efficacy. These pseudo-scientific studies never seem to do so; rather, they compare their so-called treatments to ineffective special education, which does not have a good track record when it comes to treating children with autism.
Lesson No. 9: If the purveyors of the new-fangled treatment do not compare their therapy to Intensive Behavioral Treatment, do not consider it best practice (and consider the term “promising practices” an abuse of the English language).
David: In your view, what can be done to weaken the influence of pseudoscience in autism?
Sabrina: Demand that all new treatment modalities be compared to the correct comparison group: the group of kids that receives IBT. Otherwise, call out editors of these journals as ignoring the generally accepted rules of the scientific method.
In addition, another group that needs to be critically supervised is the cadre of government funded epidemiologists and health policy professionals who create Clinical Practice Guidelines, that somehow always seem to support the rationing or elimination of access to IBT. In short, many tenured professors create junk science to block the funding of IBT for children with autism. This happened in Canada, and despite the obvious bias of these guidelines, as determined by a Supreme Court justice, these guidelines were shared around the world with other government bureaucrats attempting to block funding for treatment.
Lesson No. 10: Be wary of Clinical Practice Guidelines that are funded directly or indirectly by governments that have to fund the treatment.
David: What do you see as the most serious issue to combat in autism currently?
Sabrina: The “go along to get along” issue. There is considerable fatigue that has crept into the subfield of autism treatment. As the field matures, there are many parents and professionals who have simply be-come tired of the fight. It’s much easier for everyone to get along; however, this tendency is dangerous to the future of children with autism. To illustrate, although I love the work that Autism Speaks has done on their Autism Votes advocacy, I’m troubled by their acceptance of treatments with no science behind them. They want to keep everyone happy; however, that can be potentially counter-productive to children with autism.
Lesson No. 11: Never trust an organization based upon its size, reach or fundraising ability.
David: Please tell our readers about your current role as a board member of ASAT?
Sabrina: My role is to be the crusty parent who is a constant reminder to the professionals at ASAT that we need to always remember that the parent is the front-line portal to the child receiving science-based treatment. Although ASAT does a spectacular job providing information to the many different professionals who see or work with children on the spectrum, or those who report on autism in the media, my role as a parent is to always make sure that they understand that the parent is key in the endeavor. I’m happy that ASAT now has a comprehensive parent page on their website, but we always need to do more to provide parents with the best resources available on the web. That’s my goal in being on the board.
Currently I am involved in two committees, the Newsletter and Website Committee and the Scientific Review Committee. We recently overhauled our website and I have been focusing on enhancing navigation across the various pages and developing pages for parents of newly diagnosed children as well as parents of older children and adults. I also serve on the Scientific Review Committee and have spent time updating the scores of treatment summaries that we showcase on our website.
Lesson No. 12: Remember, we parents are the reason these professionals have jobs. They would be out of business if they had nothing to offer our children; therefore, expect results or find new professionals.
David: Sabrina, I cannot overstate the value of having a board member with your expertise in re-search methods and the parent perspective. I am very grateful for all of your efforts in making our website and newsletter offerings accessible to parents who are new to the autism diagnosis. In some of your prior suggestions you spoke about the importance of asking questions, actively participating in the carryover of skills, and in taking copious notes documenting communication. What other suggestions can you offer parents of young children?
Sabrina: Do not inherit tomorrow’s problems. Get your child into a science-based treatment program as soon as possible. As of 2017, that program is IBT based on the principles of applied behavior analysis (ABA). This treatment protocol will realize the full potential within your child. In turn, the gains your child makes will translate into a life of dignity, surrounded by professionals with solutions for your child irrespective of whether your child becomes an independent adult or someone who needs assistance throughout the lifespan. Once your child is in a high-quality program, then you can start thinking about their long-term future.
Lesson No. 13: Get your child Intensive Behavioral Treatment (IBT) based on the principles of applied behavior analysis (ABA) as soon as possible.
David: What suggestions do you offer parents of young adults and older individuals with autism?
Sabrina: There is a subset of parents with children on the spectrum who are faced with such issues as their children driving and going to college independently. Although this is where I see the lion’s share of writing on adolescents and young adults, I worry that it may be relevant to a subset of children on the spectrum who have had quality treatment, and may not speak to the ongoing challenges facing the majority of adolescents or young adults with autism. We need to do more to help this latter group.
As a parent representing this larger group striving to create a life full of joy and dignity, as long as we can figure out a way to set up their lives, here is one option I’ve found: If your child has been in a program for some time, and you see that the future is going to include full time supervision, I urge you to look into an ABA teaching home.
The goal of the teaching home is to have the person always improve and ideally master the various skills they need for increased independence. In addition, an ABA teaching home means that your adult son or daughter with autism will always be surrounded by an educated group of professionals, thereby avoiding the nightmarish scenario of the typical group home, with insufficient supervision and uneducated workers. There are several ABA teaching home models in the United States and Canada, although these models have not been widely replicated. I would like to see this model become more easily accessible and prevalent.
What do we do for those adolescents and adults who have progressed significantly and are very capable but not able to live independently? For this group, appropriate living solutions appear to be elusive.
This is where we, as a community, need to innovate our way towards the optimal, wonderful future for our loved ones. In the same manner as the ABA pioneers perfected Intensive Behavioral Intervention in the last part of the 20th century, we need to innovate to produce appropriate supported living options that are customized to our loved ones with autism. Although I’ve read about a variety of housing/living options, I have not yet seen an appropriate model for this subgroup. This is the Holy Grail of autism housing solutions.
Lesson No. 14: We need to innovate our way into planning safe, supportive living options for the tsunami of children with autism who will be reaching adulthood in the next few years.
David: What advice do you have for new professionals in the field?
Sabrina: Ideally, any professional who wants to be part of the solution should learn all they can about intensive ABA up to and including certification as a Board Certified Behavior Analyst (BCBA) or Board Certified Assistant Behavior Analyst (BCaBA). This applies as well for newly minted speech and language pathologists, regular and special educators, paraprofessionals, and occupational therapists.
For recent graduates in ABA, do not allow anyone, irrespective of credential, to pressure you into practicing anything but ABA with the highest fidelity. This is actually consistent with The Professional and Ethical Compliance Code for Behavior Analysts. That means you must question and counter all the pseudo-science out there, some of which may masquerade as ABA. There are many diluted forms of ABA that do not yet have sufficient data to be used with children on the autism spectrum and it may be your role to ensure that the team understands this. In the worst case, be prepared to be fired or resign, rather than deliver anything other than the highest caliber of applied behavior analytic techniques. If you follow this advice – i.e., stay honest and true to what is scientifically validated – you will make a tremendous difference in the lives of children on the autism spectrum and send a clear message that science matters.
Lesson No. 15: Practice ABA with the highest fidelity possible with respect to behavior analytic techniques. Never allow anyone to dilute or distract from what evidence shows works best for kids with autism. No excuses!
David: We certainly covered a lot of ground and I appreciated how direct you were in expressing your views in this interview. More importantly, thank you for sharing your time, talent, and experience with us as a vital member of our board. It is deeply appreciated!
- You can hear Dr. Freeman’s daughter’s music here.
- Dr. Freeman also publishes a blog, Autism Pundit: www.autismpundit.com.
Citation for this article:
Celiberti, D. (2017). Interview with Sabrina Freeman. Science in Autism Treatment, 14(1), 3-10.