Autism Treatment

There are as many autism therapies and treatments as there are kids with autism, so it seems. Of course, as the Seattle Children’s Autism Center cautions, it’s important to be an educated consumer when it comes to doing the research and finding something that works best for your child. I will try to list as many as I can, or at least the more popular ones and the ones I come across that either make sense to me, or at least deserve further research.

One thing I would really like to emphasize is that if you suspect your child has autism, go and get on the wait list for the nearest autism center or a qualified professional who can thoroughly assess your child.  The wait list tends to be extremely long.  The Autism Center at Seattle Children’s Hospital was 600 kids long!  Had I known about UW’s Autism Center, I would have gone there instead as their wait list tends to be much shorter.  However, you also have to see who is going to take your medical insurance.  Hence, the reason for Seattle Children’s Autism Center having a long wait list, they take State insurance.  However, regardless as to where you go for the official diagnosis, and instead of waiting for them to get you in, get started on getting services lined up.  Get a speech assessment or occupational therapy assessment, and get connected with the special services department of the school district you are in.  Just like the army, there are lines for everything and since early intervention has been shown to help the kids improve so much, don’t waste any time wondering what to do or waiting for your child to suddenly “snap out of it”.  Looking back, I should have gotten Joshua in for a speech assessment when the doctor first said something after he turned two.   Because of family circumstances at the time, I elected to wait a few more months and he was three months shy of his third birthday when he started the process.

Since we had a speech assessment in hand, we started there and within a month, he started speech therapy with Amanda at Children’s Therapy of Woodinville (http://www.childrenstherapyofwoodinville.com/index.html).  Amanda is highly trained in working with children with autism and has a wide variety of skills and knowledge as to what would best help Joshua.  She gave us simple things to do with Joshua to encourage eye contact and speech.  She has faithfully worked with him weekly and contacted me when there were additional openings in her schedule.  Her knowledge of autism, various treatment modalities, and navigating the system, as well as recommendations have been invaluable.

Janell, who was transitioning to another agency, did Joshua’s OT assessment mid July and she was able to work 4 sessions in before she transitioned to a birth to three program.  We elected to transfer our OT services to Rosemary White’s Pediatric  PT & OT Services in Shoreline after waiting for quite a while and got in with her group around Christmas, meeting with Annie.  Their approach is the DIR®/Floortime model, which is the developmentally appropriate, relationship-based approach to treatment developed by Stanley Greenspan, MD and Serena Wieder, PhD. http://www.rosemarywhitepediatricservices.com/dir.html For Joshua, this essentially involves “going into Joshua’s world in order to bring him into ours”.  She is incredible and I am constantly amazed by what she does and encourages me to do, within the constructs of play to help Joshua.  One thing we are looking at is the possibility of getting Joshua a compression suit.  He tried one during a session and wasn’t too thrilled with it at first, but I was able to distract him and he kept it on for the entire session.  It feels like your body is getting a hug most of the time and is quite cozy for a little guy with sensory integration issues.  We are also looking at having his grandma make him a weighted blanket and seeing what we can do at home to help him with his needs for “heavy work” so he no longer dumps out the laundry, toys, videos, books, etc.  The OT had a neat bunch of pillows, made with foam cubes and put inside an extra large dog bed cover.  He likes to try to stack them and get gently squished by them.  I can’t wait until the teen years when we can put some of his energy to use with yard work and other big jobs around the house/yard.   As he progresses in his speech, he has also progressed with his eye contact and social initiation.  I am continually amazed by both Amanda and Annie with the work they do, the knowledge they have and how they encourage us in our interaction with Joshua as he makes strides in his development.

I had also heard about Vision Therapy, as a means to help kids with their visual stimulation, or, “over-stimulation”.  When talking with Joshua’s Occupational Therapist, she recommended he get evaluated by Nancy T. , an eye doctor who specializes in Vision Therapy in Lynnwood.  Because of the fact that Joshua had obvious visual input issues (he would look at a book close up to his eyes and look at it from the bottom or side of his eyes, usually while lying on the floor.  I set up an evaluation for Joshua to see what the eye doctor had to say about him.  I went to the website for  Alderwood Vision Therapy (www.alderwoodvisiontherapy.com) and they had a link to what vision therapy could do for Autistic kids:  http://www.visiontherapystories.org/vision_autism.html.  I was amazed by the ability of both Dr. T and her associate, Dr. J., in conducting an eye exam on a moving target, but they both just seemed to know what to do to get Joshua’s attention and the information they needed.  I am still awaiting the results of that evaluation and intend to get him set up with vision therapy, and the glasses he may need for his slight far sightedness.

There are two other autism therapies that I have heard of that are quite popular, so popular, in fact, that aside from Floortime, RDI and ABA were the three treatments focused on at Seattle Children’s Autism Center Autism Class I attended.  Relationship Development Intervention (RDI) Program for ASD,

“is a tailored set of objectives, extending from the Family Guided Participation Program and intended to target the core deficits of individuals with the diagnostic distinction, Autism Spectrum Disorder. Started less than a decade ago the RDI Program for ASD provides a remedial approach to this complex disorder.

A comprehensive set of developmentally sequenced steps, the RDI Program for ASD is committed to re-building the Guided Participation Relationship as the cornerstone for neural development. Families under the guidance of a certified consultant slowly and carefully construct opportunities for their child’s neural growth while adding complexity. Over time, parents create a formidable impact on their child’s ability to form reciprocal friendships, mature emotional relationships, conduct successful collaborations, engage in flexible/adaptive thought and master problem-solving abilities necessary for job attainment and success in the 21st century world.

Combining all of our tools with a unique emphasis on the needs of families with an ASD child, the RDI Program for ASD restores hope of second chance for families with an ASD child to successfully engage in this universal developmental relationship, that through no fault of their own, was not successful the first time. An inter-disciplinary bio-psycho-social approach it is critical component of treating co-occurring disorders and central learning disabilities.”  (Taken from http://www.rdiconnect.com/pages/RDI-Program-for-ASD.aspx)

According to the consultant, RDI should not be used with families utilizing multiple interventions.  This is due to the fact, from what I understand, the research dimension of the program.  It is quite sucessful, apparently, but since we are using multiple interventions, we wouldn’t make a good fit.

The last intervention is Applied Behavior Analysis, or ABA.  This approach is

a discipline devoted to the understanding and improvement of human behavior with over 70 years of supportive research and implementation.

It is also based on the lawfulness of behaviors as originally articulated by B.F. Skinner and John Watson.

ABA also seeks to increase desired behavior through positive reinforcement and decrease undesired behaviors by replacing them with more appropriate responses.  (Brief Overview of ABA, Stacey Shook, PhD, BCBA-D, Autism 200 class on Popular Intervention Approaches, Seattle Children’s Autism Center)

There are ABA elements available in the other Developmental Pre-school in our particular school district.  Other parents and I would love to have that brought to Joshua’s school and am in the process of advocating for that to happen.  This approach also does well as the primary intervention, but it can also compliment other treatment modalities.

When talking with Joshua’s OT, I would agree with her that it is important to look at the entire child, and utilize various treatment modalities  when that makes sense.  The important thing is to look at the stress this places on the family and the child when you consider each treatment and how it meshes with your particular situation.  As for us, we are making use of having good insurance, while we have it.  One thing I haven’t touched on is Developmental Pre-school.  Since school districts are mandated by law to provide the most appropriate education, free of charge, getting Joshua hooked into a program as soon as possible was very important to us.  We have done a sort of “shot-gun approach”, with not only the various treatments, but also adding into it the GAPS diet we have him on.  I’m certainly interested in the science of each treatment modality but what is of primary importance to us is to have Joshua improve.  What we are doing with him now, is making a difference.  Once he starts Vision Therapy, I’m sure he will continue to improve.  That’s all I really care about.

Developmental Pre-school

In early August, I had gone to the School District office, to turn in paperwork to get Joshua evaluated for Developmental Pre-school.  For those birth to 3, there are programs available in the school district for such kids in need.  Since Joshua was over 3 years of age, he would be getting evaluated to see if he was eligible for Developmental Pre-school.  That decision was actually difficult for me, initially, as I mentioned before, that I home school my kids.  Why would I want to send my youngest child to the schools?  I should be able to care for him at home.  However, I realized I was overwhelmed and couldn’t do everything.  I would be his greatest advocate, in the school system, for him to get the education and treatment that will be appropriate for his needs.  Joshua had to go through the process, and get in line, to begin Developmental Pre-school, which, honestly, annoyed me.  He obviously qualified and I had all the evaluations in hand.  At the rate the district was going, he wouldn’t start until about Christmas time.  As it turned out, he was able to get 3 weeks in before the Christmas break, and for that, I was quite grateful.  The first meeting for Joshua starting school was in October and after jumping through all the hoops, they saw that he did indeed, qualify.  Joshua had his IEP (Individual Education Plan) on November 19th and started Pre-school on November 30th.  I was blessed to discover that Joshua’s teacher, Katie, had gotten married at our parish in the University District, just the previous summer!  What a neat connection!  God has this child in the palm of His hand, to be sure!

During the IEP meeting, I inquired as to when Joshua would be able to go full time, as per the ADOS recommendation.  What I discovered concerned me, yet encouraged me to be an advocate for Joshua as well as other needy kids at his school.  In our district, there are two schools that have Developmental Pre-school programs.  The school on one side of the district had a full day program with ABA elements, which also was recommended and highly beneficial for early intervention.  The school in whose boundaries we live was a newer program and only had a half day program with no ABA elements at all.  We basically “lived on the wrong side of the tracks”.  I have since found out that there is a possibility of a full day program next year, but all the same, I have a letter in the works to send to the Director of Special Education to inquire as to why our son was being denied the education that has been deemed most beneficial when “Under IDEA (Individuals with Disabilities Education Act of 2004, which is the federal law that guarantees a free appropriate public education to students with disabilities referred for or determined eligible to receive special education services), a free appropriate public education (FAPE) means special education and related services necessary for <my> child to benefit from his education.”   I am praying for discernment as to how best to tackle this, as I do want Joshua to successfully transition and half day is adjustment enough, right now.  However, the more I talk with other parents, I am discovering that there are  other parents wanting this as well.  So, we’ll see how best to proceed.  Perhaps a group letter would be given more weight.  I have also had the fortune to know a gal who babysits Joshua in the nursery at the church where I attend a Mom’s group and she knows a parishioner on the school board who could also advocate for us.  Wow! Pretty neat on how God works things out for Joshua’s good!  Joshua has been doing really well in Developmental Pre-school and clearly is adored by his teachers and encouraged to expand his speech development.  He loves riding the bus and is making more eye contact, even smiling at others, more and more!  As Joshua’s case manager, I am so encouraged how all his treatments are helping him and despite the challenge of managing all his appointments, he is clearly making progress and is eager to participate in each treatment he is receiving.  At this point, we are managing everything quite well.  I would like to add ABA, but am hoping that happens in the school.  All the more inspiration to get my letter done to the district.

More on Alternative Treatments:

Aside from the diet that we are doing, utilizing Cod liver Oil and probiotics, I have been looking at what else is out there in the forms of treatment for Joshua.  He’s doing speech, OT, developmental pre-school.  I have him signed up for vision therapy, to start in February.  Now, I’m looking at Heavy metals chelation, biofeedback, music therapy and hippo therapy (riding horses).  It’s time to learn more about these alternate forms of treatment.

Heavy Metal Chelation is a controversial treatment, which I would rather take a slower approach to determining if Joshua should be considered utilizing as a form of treatment.  I would be interested in  seeing what his level of metals are in his system, but there are some natural ways to go about it that would make it less stressful for him.  I would like to learn more about this particular treatment, however, a basic overview of the treatment is:

The concept behind detoxification is that heavy metals have accumulated in the child and that removal of these heavy metals (and other toxins) will improve symptoms. Some parents have reported that the effects of detoxification are as dramatic as those found with secretin.

Nevertheless, since we do not yet know how biologically active secretin is (it could be working because of the Pygmalion Effect or working in subsets of children for reasons completely unrelated to current theory), we do not know with certainty whether detoxification is working due to biological principles or do to parents’ expectations.

One source of heavy metals is thought to be the timerosol in vaccines which is associated with mercury.

The first step is often testing to determine if heavy metals are present. Typically, a 24 hour urine is obtained for heavy metals and then a dose of DMSA is given and the 24 hour urine is repeated. If heavy metals are present, they should increase when a chelating agent is given.( http://www.healing-arts.org/children/detoxification.htm)

Biofeedback, what is this, anyway?  Looking at a website that offers this service, it states that:  Biofeedback is a training approach for the brain and body. Computers monitor body processes (such as brainwave and breathing patterns) and return information (feedback) so that new and healthier patterns may be developed.  http://www.biofeedbacksolutions.com/index.html

I actually would be interested in learning more about this, being of an eclectic bent.  I know the scientific method would make it difficult to then determine what, if anything, will actually help Joshua improve, but as much as I care about scientific progress, I care about utilizing the resources we have available to us, while we still have them.  I’m basically open to anything that doesn’t involve medication or anything that could harm our child.

In researching alternative treatments, I also came across this one on byonetics.   A lot of what he says in his free e-book coordinates with Dr. Natasha Campbell-McBride in what vaccines do to kids contributing to autism.  I’m a bit skeptical, however and want to look into it more in depth.

As you can see, I would agree with the idea that natural remedies are the best way to proceed, aside from behavioral treatments as stated in this article:  http://www.associatedcontent.com/article/2137707/natural_treatments_and_natural_remedies.html

Of the treatments I would be interested in pursuing, above and beyond what we are already doing would be music therapy, and hippo therapy.  That would be a natural blend with my husband being musical, already and Joshua showing a leaning toward music anyway.  Additionally, I have two brothers who have horses, so it seems like we need to make more regular visits to see them so the kids can do some horse back riding!  I’m looking for interventions that aren’t too weird and will blend with the interests of the family.  Also, I’m interested in treatments that I know some things about or have connections to others who have utilized them.  Each child is different, which I have heard countless times, so something may work for one child that may not work for another.  That makes sense in an environmental influences perspective as well.  However, it only stands to reason, that neurologically speaking, things aren’t firing correctly in the brain and we need to do all we can to make it so.