I’m just one Dad trying to do the right thing for my child and for yours!  I fight for quality care, because I have no other choice but to fight every day!  You can help by sharing your story and encouraging others to do the same. For the sake of our children, we need our voices to be heard.  Our fight is making headway, but we need to demonstrate there are thousands of you out there.  Thousands of moms and dads that will not be quiet, but that will stand up and speak out until our last breath, so that our children have every opportunity to get the autism services and the ABA they need. 

If you are fighting to get your child Autism Services let the Policymakers hear your voice and share your story: https://www.facebook.com/StrugglingtoGetAutismServicesinPA?ref=hl

 

Autism love

  

My Story: 

On January 23, 2012, my son was diagnosed with Autism. I remember the date, because it’s the day my world changed forever! 

I’m a husband and father, but I’m also an Autism Dad in a family who has struggled for more than three years to get the help my son needs.  In those years, no amount of work or fight has resulted in our securing the required number of ABA hours prescribed for him. 

As parents, we could not stand by and do nothing, so we decided to become advocates. We joined forces with a group of parents, industry professionals, and lawmakers dedicated to change the future for all children in Pennsylvania with Autism.  We started this page to be heard, to fight, and to lobby for a better tomorrow. 

We have been told for years that we could not have ABA provided through Medical Assistance, and our private insurance also does not cover ABA.  While we have found some excellent private BCBA ABA providers, it’s still not possible to secure the number of hours of ABA therapy prescribed for our child.

With the limited private ABA we can find / afford paying out-of-pocket, our son has made gains, and it is largely due to those limited ABA services that we have seen any gain at all.  For too many years, we have been frustrated, knowing our child needs more, and worrying what will happen for him in the future if we do not find a way to overcome the problems with our State’s services for these children.  We constantly wonder how much greater his developmental gains could have been if he had the right care for past three years, and can’t allow ourselves to think too much about all that time lost.   

Pennsylvania is failing these children.  We know we are not alone.  We know there are thousands of Autism Moms & Dads out there that cannot find quality help for their children.  We ask you to join us in demanding Pennsylvania do better!

 

When your child doesn’t have a voice, YOU MUST be the voice for them! 

 

#BEHEARD!  

 

Interview with Autism Advocate, Author, & Mother: Sabrina Freeman, PhD
Interviewed By: Tiffany N. Kilby, MS, BCBA

It seems that almost weekly, there is a new “treatment,” or even “cure,” for autism.  The media is quick to spread the word about these so-called treatments (or “cures”) that have little scientific (or at times, even logical) support for the claims.  It is imperative that parents and professionals in the field of autism are educated about the necessity for evidence-based treatments for autism spectrum disorders.

 

 

Dr. Sabrina Freeman is a mother of a young adult with autism.  In addition to being a mother, Dr. Freeman is also an author and sociologist who teaches research methods.  She received her doctorate from Stanford University.  Dr. Freeman’s journey led her to found the first true autism advocacy movement in Canada, due to her dedication to advocate for the rights of individuals with autism to science-based treatment.  She is also a Parent Board Member for the Association for Science in Autism Treatment.

 

Dr. Freeman, thank you for taking time to do this interview for The Behavior Station.  It is great to see a parent advocate trying to disseminate science in the world of autism. 

Q: Can you please give some background information on your journey with autism, how you crossed tracks with science-based treatment (including applied behavior analysis, ABA)?

 

A:Way back then, in 1992, there was not much available about autism.  The person who diagnosed my daughter recommended play therapy. Back then, the Internet was in its infancy. I had university Internet, but there was no World Wide Web.  I searched for treatments for autism, but there was almost nothing of anything value.  At the time, the first Lovaas study had been published, but I had not discovered it yet.

I thought to myself, while watching play therapy, “This is ridiculous.  However, I’m doing the best I can because that’s all there is….” I watched play therapy for 4 months… After 4 months, I asked psychiatrist to recommend someone to help potty train my child. Through pure serendipity, I learned of intensive behavioral treatment and started to do the research.  My daughter received an average of 35-40 hours per week.  Today, she is able to do everything she can because of behavioral treatment, including attending 2-year college.  She had a full-time tutor accompany her, and was able to accomplish the goal of receiving a two year diploma in music.

 

Q: Applied behavior analysis (ABA) is considered best practice for people with autism; more specifically, intensive behavioral treatment is best practice treatment for autism.  In your book,Science for Sale in the Autism Wars, you mention that ABA has been deemed medically necessary with no effective competing treatments (by the BC Supreme Court), is recommended by the US Surgeon General as the treatment of choice for autism, and the New York State Department of Health Report explicitly states that withholding or not providing ABA constitutes harm done to the child (Pages 48, 49, 116, 166, 185).  How can we help spread the “medical necessity” of ABA for people with autism?  

 

A:If you don’t allow the science to guide you, as a parent, you are wasting your child’s time and your money. I’m married to ABA, not because I love ABA, but rather, in 2015, it’s the only treatment that works.  I wish there were a pill!  Wouldn’t it be wonderful to have your child take a pill every day rather than doing all the hard work that ABA entails?

The challenge is to have parents to visit the accurate sites.  Unfortunately, Autism Speaks is wishy-washy about science, yet they have most of the parental “eyeballs.” What, in fact, is actually best practices?  Parents get confused when people in positions of authority and knowledge do not take a stance.  Data is not there for all treatments, yet,Autism Speakshighlights many of these so-called treatments.

If you ever want to know what istrulybest practices, think about the Medical model.  Let’s not talk about autism.  Let’s talk about antibiotics. What happens in medical research is that the antibiotic with the most evidence (the best practice antibiotic) is tested against the new antibiotic being developed.  Now consider autism.  Researchers don’t test their new treatment against ABA.  They test it against the generic, ineffective services typically offered in the special education system.  That’s not the correct comparison group!

 

If you say that you provide best practices which have not been compared to ABA, you are clearly not providing best practices.  In short, SHOW ME THE DATA!  Look at what we know about the science in autism treatment when it comes to speech pathology, for example.  If  speech-language pathologists do not deliver their services using ABA, or compare the outcome of their services to language gains with ABA, they are not providing best practice to people with autism.

You need toalwayscompare your new treatment with ABA; otherwise, you are choosing the wrong comparison group.

 

Q: If you only had 1-2 sentences to explain to parents of autism how important evidence-based treatments are for autism, what would you tell them?

 

A: Evidence-based treatment will guarantee that your child reaches his or her potential (whatever that potential may be).  Treatments without evidence will rob your child of that opportunity.  For some children, that means eventual institutionalization; for others, that may mean a life of greater dependence than is ideal.  At the end of the day, it’s all about human dignity; your child deserves the opportunity to live a happy life, with as much independence as is possible.

 

Q: Some people say that applied behavior analysis (ABA), including the “Lovaas method” (only a subpart of ABA), treats children with autism like animals – the children are “trained” to work for treats.  How would you respond to this? 

 

A:That’s such a ridiculous statement, which generally comes from those who are ignorant about professional ABA.  Good ABA, againgoodABA, is completely customized.  Not only does it not treat a person like an animal, it allows that person to better get their needs met.  If you think about it, this is the opportunity for the child to progress to the point where they have choices, understand what is going on in this complex, often cruel, social world of ours.   When ABA is provided to a child, it is because someone actually cares enough to help the child reach his/her potential.  How is that possibly cruel? How is that treating them like an animal?

 

Another point that these morally preening, anti-behaviorists do not understand is that we all are motivated by certain things.  We run towards pleasure, and we avoid pain.  Why do you get up to go to work in the morning?  Presumably, you receive a reward, a paycheck.  Why do people avoid the dentist, even though it is good for them?  They want to avoid pain. Good ABA actually customizes a child’s life to bring that child pleasure – it’s all about that child’s future happiness.  If you don’t do ABA, that child will end up with a much more difficult life with less independence!  If you don’t do ABA, what is the alternative?  We saw the alterative for 50-60 years – these kids ended up institutionalized.

 

Why would anyone call ABA cruel?  It is exactly the opposite.  ABA gives every person with autism the opportunity to have a better life. Think for a moment about a two-year-old.  Two-year-olds are toldnoall the time.  The term no, is not a terrible term to use.  It is a very clear term that communicates a concept.  By not teaching a child with autism the difference between Yes, and No, you are actually discriminating against my child, because she’s disabled, and every other child with autism, too.  Every opportunity that your little Johnny gets, I want my little Johnny to get.  It’s my child’s right! It may come as a surprise to you that I was not always pro-behaviorism.  I was philosophically opposed to behaviorism because I accepted the anti-behavioral propaganda as truth.  Then my child was diagnosed with autism.  When you have a child with autism, you may have to reevaluate your philosophy if it contradicts the science.  You may have to become open-minded and knowledgeable.   Moral preening is a privilege for those intellectuals who have no need to reevaluate their philosophy.

 

Bad ABA is highly problematic and should never be accepted.  That’s why there is certification, and stringent ethical guidelines.  It’s exactly the same for any profession. Think about it… bad doctors are arrested for malpractice. That doesn’t mean medicine is bad.

 

Q: In your book,Science for Sale in the Autism Wars, you state: “It is my hope this book puts the necessary spotlight on the harmful role of health technology assessment in the ongoing autism wars, wherever the next battle is waged.”  This is definitely the take-home message of your book.  For those who have not yet read the book, can you briefly explain what you are referring to here? (Page 213)

 

A: There are a group of so-called academics that practices “advocacy research” which is basically junk science painted with the patina of legitimacy.  These technocrats often have positions in the economic and epidemiology departments at universities.  They are typically on the payroll of governments with single-payer health care systems and they decide which treatments will be covered by government health insurance and which will not.  In the case of autism, they have warped and distorted the science of intensive behavioral treatment to give governments a “fig leaf” to avoid having to pay for this treatment, since it is expensive due to its intensity.   My book,Science for Sale in the Autism Wars, provides those waging the battle against these technocrats the ammunition they need to uncover their fraudulent science.

 

Q: The last sentence of your book,Science for Sale in the Autism Wars, was: “As this book goes to press [in 2003], the Government of British Columbia has yet to comply with the judgment of the B.C. Court of Appeal.” – It has now been over a decade since.  Has this been resolved? Do you have a source in which we can receive accurate updates on this? (Page 218)

 

A:On November 19th, 2004, the Supreme Court of Canada ruled against the parents.  Their view was that this was not a discrimination issue (a legal issue), but rather, a political issue; therefore, these children were left to the vagaries of each province to provide, or not provide, treatment.  To date, no province has accepted these children into the single-payer health care system for their core health need, autism treatment.

 

Q: Is there any more information you would like to share with parents that you have not already stated?

 

A: At the end of the day, you are your child’s best advocate.  Let science be your guide, and surround yourself with professionals who will fight for your child’s right to be provided best practices treatment in every environment.  Treatment does not stop at the threshold of your child’s school, nor does it stop at the entrance to the summer camp.  ABA is your child’s right.  The key is to prepare your child to succeed in every environment with the qualified supports that he or she requires.  Although this may sound daunting, it is currently (in 2015) the only possible path open to you, the parent, to ensure your child’s future.

 

Dr. Freeman, thank you for taking the time to participate in this interview, and sharing your personal journey with us.  At The Behavior Station, our mission is to transport resources and map out science-based information.  We hope that we can help you to continue to spread the word and advocate for individuals with autism.  Thank you for all that you have done to educate people on autism and autism effective treatments.  I believe that autism awareness has been spread widely – now we need to gain autism acceptance and disseminate science.  We look forward to the day when we can say the “autism wars” have ended – and when science is center for all individuals with autism receiving treatment.

 

Original Source:  https://thebehaviorstation.com/interview-with-dr-sabrina-freeman/

 

 

I want my aba

 

 

1) Applied Behavior Analysis (ABA) is the most effective treatment for Autism Spectrum Disorders, AND the law requires some Private Insurance Plans AND Medical Assistance (MA) in Pennsylvania to cover it. If you are not sure if your provider (such as a BSC or TSS) is skilled at providing ABA please refer to our handout “How Would I Know My Child Was Getting ABA.” In March of 2015, the Department of Human Services (DHS) confirmed that ABA should be a service offered to children covered by Medical Assistance.   Yet we know dozens of families who cannot access ABA for multiple reasons and we suspect hundreds more are encountering the same obstacles.  Parents and Providers, this is why we need your help!

 

1) Contact your insurance and tell them you have not been able to find an ABA provider (BCBA) and that you need their help.  See what they recommend.  Ask if you can go out of network to get your child services faster. 

 

2) At the same time, contact the government by email at This email address is being protected from spambots. You need JavaScript enabled to view it. and copy Rachel Mann at This email address is being protected from spambots. You need JavaScript enabled to view it. at the Disability Rights PA and tell them what is going on so they can follow your case to make sure your child gets the services he or she needs.  

 

 BE HEARD

 The more we raise our voices the better our results will be in helping our children! 

 

 

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