Pathways Developmental Learning Center

March 6, 2009

Autism is no excuse for child abuse

I have been debating whether or not to write this post. As a professional in the field of autism intervention I realize that the overwhelming majority of people who choose to become therapists, educators, or helpers to those with developmental disabilities such as autism have good intentions. However, there are certain practices that have been used with people with autism for a long time that make me cringe. Honestly, I believe people think they are doing the right thing – but do they ever stop to ask themselves “Hey, would I be doing this if this person did not have autism?”

There is a certain mentality that pervades some circles in the autism community. Almost like the person with autism is not a person – like they are a sum of behaviors that need to be fixed, shaped, modified or extinguished. If we were not talking about autism, but were talking about *real* human beings instead, we might say the person attempting to fix or shape us was a control freak, even abusive. Think about the following scenarios. Would we say this was okay to do to a person without autism? Would we do these things to our children, siblings, friends, co-workers? Are these things okay to do to a person just because he or she has autism?

  • Demanding eye contact by grabbing the person’s face and forcing them to look at you
  • Talking in front of the person like he or she is not there, often describing incidents that to most people might be embarrassing or present them in a negative light (e.g. “He had a tantrum today”)
  • Two adults physically manhandling a small child to cut toe-nails, without asking parents’ permission
  • Treating a person with autism (of any age) like a pet, talking about how ‘cute’ they are for doing x, y, or z
  • Using electric shock to control unwanted behaviors that are not dangerous or life-threatening. Forcing a child to wear an electrical shock device in a backpack 24/7 to instill fear in him so that he will comply with whomever places a demand. Electric shocks may be given for something as slight as taking hands out of the lap or getting out of one’s seat.

Unfortunately all of these scenarios still exist in this day and age, when we know autism is NOT a behavioral disorder, people with autism have neurological challenges and are not ‘acting out’ or intentionally misbehaving. People with autism have perceptual differences that affect how they process information. Research continues to elucidate sensory, motor, and cognitive differences in the autism population. Yet somehow the idea persists that a purely behavioral approach is going to solve the *problem* of the autistic child.  I am particularly disturbed by a recent article I read about the Judge Rotenberg Center in Massachusetts. Though electric shock is an extreme example, I think it is just one end of the continuum of the general mentality that is still pervasive amongst professionals who work with people with autism. Furthermore, I often see where that mentality is passed onto parents who inadvertently begin to see their child in the same way as their circle of therapists and professionals.

I have been reading a little about the Judge Rotenberg Center after seeing some posts on a blog written by a woman with autism. I am apalled. I recognize that historically people with autism (as well as other developmental disabilities, mental illness, and physical disabilities) have been marginalized in society. I just don’t understand how it can continue in our society in this day and age, when we know so much more about the causes of behaviors. I don’t understand how electric shock can still be used, and not even with the most severe cases of behavior problems, but for ‘milder’ issues like ADD/ADHD? How can shock be used for behaviors like getting out of one’s seat or taking hands out of your lap? What is wrong with people? Furthermore, how can research be published in reputable journals stating that this type of therapy has no negative side effects? Surely individuals who are exposed to this type of shock treatment experience forms of Post Traumatic Stress.  This type of treatment causes patients to live in a constant state of fear and anxiety that at any moment they might be electrocuted without warning. Does this not qualify as torture?  I repeat, what is wrong with people?

I just can’t comprehend using such extreme measures for any human being, or animal, for that matter. There are whole movements aimed at prevention of torture of animals using electrocution in experiments – Animal Rights, ya know? What about the rights of people with autism? Who’s fighting for them?

Advertisements

February 26, 2009

Join Autism_Dev_Therapy Yahoo! Group

Filed under: support group — Tags: , , , , — Pathways @ 11:45 am

This is a group for those with “open minds and open hearts” (to quote a recent post) to discuss and share experiences with various developmentally-oriented therapy approaches used to remediate autism and related disorders. Therapy programs which fall under this category include relationship-based approaches such as Relationship Development Intervention (RDI), DIR/Floortime, SonRise and Miller Method. Neurodevelopmental programs like HANDLE and Brain Gym, and Sensory Integration therapies like Auditory Therapies or Vision Therapy are also discussed. Parents and Professionals are welcome!

To join, just go here: http://health.groups.yahoo.com/group/autism_dev_therapy/

January 9, 2009

A Message for Parents From a Consultant

Filed under: Parenting and Autism — Tags: , — Pathways @ 2:22 pm

In the time that I have been working with children and teens with autism (roughly 13 years), it amazes me that only a handful of parents have ever asked me for references or a CV. When I’ve spoken to parents about this, the common feedback I get is that there are so few people who are willing to do this work and they are so happy to find someone to work with their child they feel like they can’t be picky. In other cases, it just didn’t occur to them because they assumed the professionals know more than they do.

I find it hard to believe either of the above statements. Admittedly, when I first started working in the autism field, most people had no idea what autism was. I recall having to explain what autism was anytime someone asked me what I did for a living. Today, however, it would seem everyone knows someone with a spectrum diagnosis, and the media has made the general population much more aware of the disorder (even if sometimes the media tends to propagate the myths…but that is another blog post!)

In my experience in this field, which I don’t feel is a terribly long time, but is long enough to see the trends, I’ve seen the good, bad and ugly of the autism world. For (new) parents who don’t know the difference, choosing a consultant should be a systematic process which can help reduce the risk of having a less than ideal experience for your child’s program and therapy needs. Unfortunately, I don’t believe there is a ‘how-to’ manual out there for parents on how to organize their priorities and make decisions regarding choosing a consultant. This list is not intended to be exhaustive, but might provide some guidance for how to go about thinking about hiring a consultant.

Tip #1 – Know that YOU are the expert on your child, no one else is. Do not put a consultant’s opinion of what is best for your child above your own. Trust your parental instincts and share your concerns with your consultant. Realize that no one knows all the answers about autism or about how to help your child.

Tip #2 – Know what you want for your child and family. Have a clear idea of what your goals are for your child’s progress and treatment. Write these goals down in the form of a story – think short term and long-term. Where do you want your child to be in 1 year, 5 years, 10 years? Use this as a benchmark to monitor your child’s progress and to gauge if your consultant’s approach is meeting your needs. These goals will help you decide what therapy avenue is most likely to help your child at any point in time.

Tip #3 – You are hiring your consultant – interview them! Always ask for references and a resume/CV of your potential consultant’s education and clinical experience. Make a list of the characteristics you would like in a consultant, as well as questions you may have for them. Questions might include: “How long have you worked with children with autism?” “Have you worked with kids like my son/daughter (describing your child’s issues)?” “How do you measure progress?” “How do you stay up to date on the research?” “What journals do you read?”, etc.

Tip #4 – Understand what your consultant’s credentials mean. Do not assume a PhD means the consultant had any training in child development, neurodevelopment, family systems, or education. In some cases, the curriculum for a widely-recommended-autism-therapy-which-shall-remain-nameless contains NO requirements for any of the above areas. Be cautious. It doesn’t mean that every consultant with a PhD in said-non-child-development-oriented field is a glorified dog trainer, but that is why parents should always check and ask about what kind of educational and clinical experience the person has. Find out how your consultant stays current in the field and how broad his or her continuing education topics are. Does he or she only attend CE courses in a very narrow field, or is he/she exposed to various disciplines that look at autism from different perspectives? The breadth of your consultant’s experiences can reflect how open-minded he or she is.

Tip #5 – Know your parenting philosophy – and hire a consultant who supports and enhances your parenting abilities. Historically, parents have been left out of the equation in the autism treatment world. This is changing as more parents are choosing relationship-based interventions which have developed out of child development research. I’ve heard consultants say they will let the therapists do the work, so mom and dad can “just be parents”. The problem is, many children with autism do not know how to give the feedback for mom and dad to ‘just be parents’. Therefore, many children with autism are missing out on the most crucial learning relationship of their lives – the parent-child “Guided Participation Relationship” (GPR). In addition, many parents of children with autism feel overwhelmed, frustrated, and at a loss as to how to regain the role of guiding their child’s development. If you are unsure about how to parent your child with autism, this is even more reason to find a consultant who can guide you to identify obstacles to this crucial relationship. What kind of a relationship do you and your child have when the therapists leave?

Tip #6 – See the Big Picture. Make sure your child’s development is assessed in all areas and that treatment priorities make sense. For example, if your child is communicating (nonverbally and verbally) at the level of a 1 year old, don’t drive him to therapy 3 times a week to work on handwriting skills. It just doesn’t make sense. Likewise for focusing prematurely on academics – if your child’s skill development is extremely variable, with lots of gaps at the ‘base’ and some splinter skills at higher levels, try not to get too starry-eyed over those splinter skills. Build a solid foundation and the rest will come. It is heartbreaking to watch a very bright academically talented youngster become overly reliant on one or two splinter skills and fall apart in the areas that really matter for good quality of life: friendships, adapting to changes, enjoying others’ variations, ability to ‘go with the flow’, etc. Don’t fall into the trap of thinking one or two extraordinary abilities is going to compensate for the autism – it won’t.

Tip #7 – Understand that autism is a multi-factorial disorder, which includes systemic dysfunctions in the brain and nervous system, which subsequently affects the individual’s ability to function in social systems: family relationships, peer friendships, relationships with teachers, co-workers, bosses, etc. It starts little and snowballs to impact larger systems. Educate yourself on what researchers are saying about the deficits of autism. Recognize there is not a ‘quick fix’, miracle drug, pill, vitamin, etc. that will suddenly reveal a normal child trapped in an autistic body. There ARE approaches that are geared toward remediating autism at the neurodevelopmental and psychosocial roots – but as occurs in child development, these remediation approaches occur as a dynamic process over time, NOT as discrete skills that will be taught overnight. Learn the difference and find a consultant who knows the difference.

Tip #8 – Accept that you cannot do it all at once, and that your treatment plan may change over time. If your child has multiple challenges to his or her healthy development, identify the most pressing concerns and prioritize interventions. Obviously physical health is a priority. If your child has allergies, toxicity issues, or co-occurring physical disorders that interfere with her ability to attend and learn from others, this could be a priority. Recognize that your child’s development occurs in small steps, and requires a solid foundation of healthy body AND healthy relationships. As your child develops and grows, you may find yourself making changes to the treatment plan as priorities change.

Tip #9 – Be aware of the egos and politics involved in autism. Just know that often what is recommended for treatment  is not necessarily ‘tried and true’, but may be lucrative for the person/organization providing the recommendation.  Also know that not all people respond well to change – and, well, a LOT of research has come out since the fringe psychologists of the 60’s began working with people with autism. Know the history of autism treatment and how it is evolving. In my opinion, when the well-being of a child is involved, there is no room for ego. Look for a consultant who is not afraid to analyze, investigate and incorporate new research information into his or her practice and who can check his or her ego at the door. A consultant who is open-minded and can troubleshoot with you will be more useful than someone who insists you must keep doing the same thing over and over even though you don’t feel it is working.

Tip #10 – You are your child’s best hope. You know your child like no one else does, and you are more invested in your child’s future than anyone you will ever hire. Do not deprive yourself nor your child from the joy of a shared journey together. Autism is not an easy road to travel, but it is not hopeless. Find a consultant who genuinely cares about your child and family’s journey and who truly believes every child can reach his or her potential.

Autism Remediation vs. Compensation

Filed under: Uncategorized — Tags: , , , — Pathways @ 1:59 pm

There appears to be a lot of confusion in the autism community between remediation and compensation. The term ‘therapy’, to me, means a treatment is attempting to remediate, or get to the root of, the autism condition. There is a lot of debate about what it ‘means’ to have autism, ranging from a ‘mental illness’ to purely ‘cognitive deficits’ to a broader, whole-body-systems disorder, including immune system and gut issues in addition to the neurological challenges. Depending on the views of the practitioner, any specific ‘therapy’ may be thought of as attempting to remediate autism from a neurodevelopmental, cognitive, or physiological frame of reference. However, when things like social stories and picture schedules are listed as ‘therapy options’ for parents, for some reason this really annoys me. These are not treatments for autism – in other words, using social stories and picture schedules are not going to make a child any less autistic. They may be useful, functional and allow the child to cope, yes…I am not saying they should not be used or are not helpful. But if any progress is to be made in the autism field as far as getting to the root of the disorder, maximizing potential for progress, and actually building new neural pathways, then I believe it is important that people understand the difference. Otherwise, a family may spend years teaching through picture schedules or social stories thinking they are ‘remediating’ when in fact they are compensating. This is okay, as long as a remediation program is also in place – however, years of compensation without also focusing on remediation will not likely result in lasting meaningful changes in quality of life. I think websites which attempt to educate parents about therapy options should at least differentiate between ‘Therapy’ and ‘Strategies’ (e.g. compensations). Just my 2 cents.

January 8, 2009

I’m moving to WordPress…

Filed under: Pathways Developmental Learning Center — Tags: , , — Pathways @ 3:07 pm

After investigating wordpress and seeing a few of my fellow bloggers mysteriously make the move, I decided to jump on the bandwagon before I really had a lot of blogging under my belt. So here was my first post on my old blog:

10/28/08

I am excited I will be traveling to Delhi to assist The HANDLE Institute in presenting a 2-day workshop about the HANDLE program. As far as I know there will be about 50 participants in the course, and they are primarily interested in HANDLE to help children with autism spectrum disorders. I truly believe it is a gift to be able to share this knowledge with others, and especially to travel the world and experience other cultures in the process. Dates and location of the course is available on the HANDLE Institute’s website www.handle.org.

Blog at WordPress.com.