Stick a label on it: Acronym Soup and the quest for Truth in the Land of Special Needs

Sometimes, labels only belong on apples.
Image from: http://www.646industries.com/beyond/
(which is also a pretty funny website)

The land of Special Needs is filled with labels.  Reactive Attachment Disorder, Down Syndrome, Attention Deficit Hyperactivity Disorder, Fragile X Syndrome, Learning Disability.  Everything seems to be a syndrome, disorder or disability.  Then these mouthfuls get shortened into acronyms.

Someone with Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder becomes someone with ASD & ADHD.  ASD & ADHD may be easier to say, but what do they mean?

Imagine a teacher reading an IEP (another acronym) that says a student has ADHD and ASD.  What does this mean?  For the teacher?  For the classroom life?  For the student?

Here’s the answer: it depends.

As a Special Education Teacher for more than ten years I’ve taught students in every major Exceptionality category recognised by the Ontario Ministry of Education (Gifted, Learning Disability, Autism Spectrum Disorder, Behaviour, Speech and Language, Physical, Multiple, Blind & Low Vision, Deaf & Hard of Hearing, Developmental Disability, Mild Intellectual Disability).

I also teach teachers about Special Education in Ontario.  (This is a 16 week course at a major university, but I digress.)

What is the big kernel of truth about Special Education?

It depends.

Parents seeking the absolute truth about their child’s recent diagnosis will be both frustrated and overjoyed.  There is no crystal ball to predict your child’s joys, successes and failures.  We simply do not know what the future holds.

Teachers seeking the ‘right way’ to teach all students with Autism Spectrum Disorder, Reactive Attachment Disorder, Down Syndrome or Attention Deficit Hyperactivity Disorder will be frustrated beyond belief.  Most teachers want to know the ‘right’ way to do something in all situations.  They want to be able to check the right box, refer to the right manual, pull out the right assignment and succeed in teaching students.  Teachers want to be right.  So they are crushed on the first night of our 16 week course when I announce the secret to teaching students with Special Needs is: it depends.

I need to say these labels do not come about on their own; there is ample scientific research to support these diagnoses.  The Diagnostic and Statistical Manual (DSM) lists very specific criteria for Attention Deficit  Hyperactivity Disorder and Autism Spectrum Disorder.  Characteristics need to be evident for more than 6 months, and a check list of symptoms and traits needs to completed by a professional before a diagnosis can be considered.

I will say that having an accurate label or diagnosis will open doors for people – for Special Education support, government funding, IBI therapy, etc…  A label can help you get what you need.  But a label is not you, the person.  It is an identifying marker, much like the sticker on the apple.  It’s an add-on, applied to you, not who you are.  There is a big difference.

The traits associated with these exceptionalities are well supported by research.  For example, Autism Spectrum Disorder is regarded as a triad of impairment in the domains of:

–  communication (such as language delays, difficulty with non-literal and social use of language);

–  social interaction (such as lack of emotional reciprocity, impairments in nonverbal cues to indicate social reciprocity);  and

–   behaviour (such as restricted repetitive and stereotyped patterns of behaviour, interests, and activities).

The big problem? We know what someone cannot doWe do not know what they can doWe do not know their potential.

For example, think of two people who have Autism standing beside each other.  What do you have?  Two people with Autism.  Just like you could have two people who are Portuguese, or have brown hair or are Packer`s fans.  Yes, they have some traits in common.  But there are countless differences between them.

Which leads us back to our ability to effectively programme or teach or predict the future for people with Special Needs:

It depends.

It depends on the person – what do they like? What are their hopes, dreams, deepest desires?

It depends on the situation – what social and environmental supports are available?  It there a school program for gaining work experience?  Extra time on tests?  Support for organization or reading?  What is family support like?  Is the person involved in the community?  Church, temple, recreation programs?

It depends on the traits the person has.  For example, do they have strengths that steer them in a certain direction like the arts, computer sciences or vacuuming car mats?  I am serious about this one, I once had a student who had Autism and a Developmental Disability (i.e. an intellectual disability aka mental retardation) – she loved vacuuming car mats and doing the cleaning for detailing cars.  Where do her strengths lead her?

It also depends on an individual`s needs – everyone is good at something and not so good at others.  That is human nature.  There`s a really good reason why I do not do my own taxes – I simply am not good at it. (Ok, I am truly terrible, and would meet the DSM criteria for Income Tax Dysfunction Disorder, if there was such a thing.)   So I hire someone who is good at doing taxes.  Problem solved (at least for this tax year).   This is the way society works.  If my car needs repairs, I take it to a mechanic; someone I hope is an expert in this area.  I do not believe there is a single person on this planet who is great in every area.

Imagine all the areas this person would have to be great in – smiles, hugs, building nuclear devices, writing novels, being a shoulder to cry on, fixing cars and computers, growing vegetables, walking dogs – the list goes on endlessly.   If you do know someone who can do these things, let me know. Otherwise, realise most people are great at something and not so great at other. That is why we are people, not machines.

If you do know someone who can do these things, let me know.  Otherwise, realise most people are great at something and not so great at other.  That is why we are people, not machines.

Let`s go back to our acronyms and definitions of exceptionality.  For the most part, they are definitions based on what someone does not have.  Damaged or missing X Chromosome?  Fragile X syndrome.  Inability to focus on boring tasks?  Attention Deficit Hyperactivity Disorder.  We already talked about the triad of impairments in Autism Spectrum Disorder.

Consider Developmental Disability (aka Intellectual Disability aka mental retardation).  First, you will notice the name of this exceptionality changed over time.  Mental Retardation (with the associated mild, moderate, severe and profound) is a medical diagnosis and was used in social, education and medical circles for many years.  Now, it`s heavily stigmatized and no one uses it.  We talk about Developmental or Intellectual Disability instead.

We refer to people who have low cognitive ability, limited intelligence, inability to think abstractly, are concrete thinkers.

The DSM criteria for Mental Retardation is one of deficits:

-Significantly subaverage intellectual functioning: an IQ of approximately 70 or below on an individually administered IQ test (for infants, a clinical judgment of significantly subaverage intellectual functioning).

– Concurrent deficits or impairments in present adaptive functioning (i.e. the person’s effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least two of the following areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety

Ok, we know what they cannot do.  But what can they do?

It depends.

We know thinking skills are limited.  But, heck, so are mine when it comes to doing my taxes.  What are their hopes, dreams, strengths?  Think of the girl vacuuming car mats – I would love to have someone like that in my life.  My car would be clean, I would be happy and she would be happy.

How can we make sure the person with ‘special needs’ in our lives is happy?

It depends – on you.  You need to see their potential, help them harness it and help them make it happen.  Just like you can help me with my taxes this year.

This was also posted on http://www.specialneeds.com/

Advertisements

About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
This entry was posted in disABILTY, Halfpastnormal is who we are, School and tagged , , , , . Bookmark the permalink.

3 Responses to Stick a label on it: Acronym Soup and the quest for Truth in the Land of Special Needs

  1. I really like this post. 🙂 One of the reasons I don’t just come out in my world and say “I’m autistic”, but rather let people talk about me behind my back and assume that I’m just super weird and babyish (which wouldn’t be that far off, quite honestly ;)), is because when there’s a diagnosis, regardless of what it is, there’s always a focus on what you can’t do, not what you can. And that drives me insane. Back in April, I helped to organize the “Autism Positivity 2012 Flash Blog” for the last day in April… why? because throughout April (and the rest of the year), all that is focused on is the “can’t”s and never the “can”s. But what you say rings true… everybody has strengths and weaknesses. It’s just that for some people, those strengths and weaknesses aren’t what society considers “normal” strengths and weaknesses, and because of that all they see are the weaknesses. I bring up the autism positivity flash blog, because throughout the entire thing, I was constantly saying something along the lines of: “too much of the time, the focus is always on the deficits, and “fixing” the deficits. No pause is taken to look for the strengths. It is only when strengths are developed that a person can feel valued and have the desire to work harder and learn more. By working with people’s abilities, they can develop the tools needed to help compensate for and work with/around weaknesses.”

    Wow, sorry I’ll get off my soapbox now, but I just wanted to say thanks, for writing this. I couldn’t agree more. 🙂

    • Angela says:

      Thank you E – I love that you said, “too much of the time, the focus is always on the deficits, and “fixing” the deficits. No pause is taken to look for the strengths” We need to appreciate what makes us unique, just because we are all ‘special’ in some way. Thank you speaking from your soapbox, I appreciate your voice any time!

  2. Stacey says:

    It is all about potential, isn’t it? We need to raise the bar for our kids because no one really knows what they are capable of. We need to give them the chance to show us what they CAN do instead of writing them off because they have a label. “Realize that people are great at some things and not so great at others.” Thanks for this great post.

Like it? Share it! Please comment - I'd love to know what you think.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s