A few definitions, concepts and other stuff Monday, Dec 22 2008

Okay, I began thinking that I’m probably somewhat jaded with the terminology associated with autism, biomedical intervention, therapy and the like. On that note, I felt a glossary of sorts might help people sort things out regarding treatment options and ideas. If some of this seems elementary, keep in mind I am trying to make this as simple as possible. These are in no particular order, although I may edit and alphabetize them in the future.

Nutritional supplement – vitamins, enzymes, transfer factor, probiotics, most antivirals and antifungals that are not prescribed by a physician.

Homeopathic, homeopathic remedy – any preparation made according to homeopathic rules, typically not recommended for use unless under the care of a homeopath or naturopathic doctor

Prescription drug – any drug prescribed by a physician

OTC drug – over the counter drug, no prescription necessary

Vitamins – nutritional supplements that are either single or mulitple vitamins to supplement intake

ND – naturopathic doctor

GFCF – Gluten Free Casein Free diet, very popular in the ASD community.  Variants are GF for gluten free and CF for casein free.

SCD – Specific Carbohydrate diet, and specialized and restrictive diet designed to help find out what allergies are present

Feingold – an ADHD diet that removes food additives and salicylates to treat ADHD and certain ASD behaviors by removing irritants and allergic material

Now let’s talk about some therapies.  I know the ASD savvy will know most of these, but this is also for folks who don’t know anything.

OT – occupational therapy

SI -Sensory Integration, a specialization in the OT field

Sensory Diet – certain sensory activities done on a regular basis to help overcome emotional and physical sensory processing difficulties

PT – physical therapy

Speech – speech therapy

ABA – Applied Behavioral Analysis, a type of behavioral therapy, currently the gold standard in ASD treatment

DIR, DIR/Floortime – Developmental, Individual Differences, Relationship-based approach, another type of behavioral therapy

RDI – Relationship Development Intervention, yet another type of behavioral therapy

Now let me put some of it in perspective.  I chose these terms because

A) the were the first ones that came to mind, and

B) we use most of these terms in our household and chatting with our friends about autism and ASD.

First off, the biomedical terms are especially useful when dealing with nutrition.  For example, My son Raymond is on a CF diet and takes no prescription or OTC drugs.  We are starting Feingold at the beginning of January, but will still remain CF.  Raymond takes specific, measured amounts of nutritional supplements, homeopathics and vitamins under the care of his pediatrician. His pediatrician is not an ND or homeopath, but has received training in both areas and uses them regularly in her practice.

Obviously knowing the code is half the battle when talking about autism and ASD.  Now let’s talk about therapies.  Once again, I will use my son as an example.  Raymond attends speech and OT with local practitioners. His OT specializes in SI and has given us a sensory diet to help Raymond develop and maintain his emotional stability and self regulate. We also use DIR/Floortime to help Raymond better understand communication and how it works.  We considered ABA and RDI, but felt that DIR was the best alternative for him based on his function level, play style and ability to overcome challenges.

Naturally, there are a thousand more terms I’d like to put in here, but I feel like this post is long enough.  I’ll be throwing some more posts like these in my blog, as well as exploring these therapies and why we chose the therapies we use, but for now I’ve got to go chase after my son before he dumps another container of syrup on his trains!

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Early Intervention, or the first time we heard “autism” Friday, Nov 21 2008

I’m going to jump ahead a little to when we first decided to contact our local early intervention services.  The reason for that will become apparent, I promise.

So at 2, Raymond’s aunt commented on his lack of language.  She works for early intervention up in Maryland, so we naturally took her seriously.  I was definitely noticing the lack of language, but still in a great deal of denial that there could be a problem.  I was still of that folksy mindset that “some kids talk later than others.”  Still, after some heated discussions, I finally agreed to put in a request for the PE-ID program, which stands for Parent Education – Infant Development.  It is handled by our local community services board.  It is a federally backed program, but PE-ID is the name in Virginia. The name varies from state to state.

So the intake woman came out, and we began doing the paperwork.  She filled out what I now know to be a sensory profile and asked a number of questions about birth and development.  We were at a point where we felt like we were almost done, and my wife asked “What do you think?”  The intake officer looked us both in the eye and said “I think you should be prepared to accept that your son has autism.”

I think I literally saw red.  Let me explain my perspective for a moment.  Prior to accepting these issues, I felt it was my job as a father to protect my son.  This woman, who had seen my son for less than 2 hours, was telling me something that his pediatrician hadn’t mentioned to us.  I was furious, mainly because I felt my son had not had the opportunity to “defend” himself by showing his skills in a full evaluation.  Convoluted, I know, but denial makes logic flow through the most unlikely crevices.

My wife immediately burst into tears.  I said something like “I don’t think you are qualified to make that statement.”  I am fairly certain I kept my temper controlled enough not to curse, but I wouldn’t swear to it.  Naturally, the remainder of the interview was somewhat uncomfortable, as I was angry and my wife was in tears.  The intake officer left, and Kelly and I fought like there was no tomorrow.  What exactly we were fighting about is fuzzy now.  I think we were both so emotional it was the only way we could express what we felt, but I was still angry when I woke up the next morning.  Naturally, I called the agency to complain.  Her supervisor apologized for her statement, agreed with me, and basically said whatever she thought I needed to hear to shut me up.

So, thanks to my complaining we ended up with the director of Speech Therapy for PE-ID.  She was wonderful.  The evaluation went as well as it could, and naturally it discovered a significant delay in both receptive and expressive language.  We qualified for services, and we started weekly speech therapy visits. Interestingly enough, now that I think back, there was no indicated need for occupational therapy. I can only attribute that to Raymond’s refusal to cooperate in the eval, the beginning of a trend that we still see today.  I can’t really blame him.  Evaluations suck, doctors offices suck, and being asked to do the same things over and over for different people must suck more than anything!

She is a wonderful therapist.  She showed us how to engage Raymond, and that he could concentrate if he was interested.  That was the first real glimmer of hope. As we went through the process, I watched his language grow.  Incremental growth, but at least he was moving forward.  She was well spoken enough to break the news to us gently, and really helped us begin to navigate the autism road.   She was politic enough never to mention autism, assuming we would research on our own.  She was right.  Both my wife and I were researching autism seperately, not mentioning it to each other because we had already had several fights about it.

PE-ID took us up to Early Childhood Intervention Services with our county school system.  I want to give a few details about the program, just in case anyone is looking for something like it in their area.  First off, our local RACSB has a great questionnaire to see if you qualify.  That can be found here at the RACSB web site. A list of lead agencies for early intervention programs by state is here.  There is more info out there, just google it and you will find tons of stuff.  The program is actually created by IDEA, so the fact that both candidates were willing to fully fund IDEA is a really big deal for everyone in the disability community.   As long as the president elect fulfills his promise, he will have my support.

Finally, I attended a training class last night for our local Special Education Advisory Committee.  My wife and I plan on joining to help advise on areas that are underserved, and to make our voices heard.  Who should be there but the intake officer who first came out to our house.  I sat through the class, half there and half reflecting on how I behaved. I have thought on numerous occasions that without her, we might have been years in dealing with denial and refusing to see the light.  I have also often felt guilty for what I did, knowing as I do now that she was trying to help our son.  So, being a man of conviction and humility, after the class was over I went over, introduced myself again and apologized.  She seemed genuinely touched by it, and I also thanked her for having the courage to tell us her real opinion.  I told her an abbreviated version of what we went through, and she seemed genuinely happy to hear about it.  I even offered to write a letter to her boss!  She said that wasn’t necessary, but thanked me anyway.  We chitchatted for a few minutes and then went our seperate ways.  It felt good, as doing the right thing often does.

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