Sunday, May 5, 2013

High-Functioning "Needs"

There isn't a week that goes by when someone doesn't tout off about how Malcolm "doesn't look", "doesn't act" or "doesn't seem" autistic. "Does he really need to be medicated?" "Parents today just want an easy fix for everything." (as if we were aware that this particular insult was being directed at us.) and "Well, those doctor's don't know everything."

Let me take this moment to clear the air, and educate and put to rest any misconceptions or ignorance you may have about Autism. In particular, HFA. Or, High-Functioning Autism. 

First and foremost. Unless you spend any significant amount of time with him. Don't believe for one moment that you have any knowledge, comprehension or insight about Malcolm, or Autism. I'm not sure I can make it any clearer than that. 

See. The biggest misconception we face is that because he's been diagnosed "Autistic"... he's supposed to rock back and forth, slap himself in the head, count fallen boxes of toothpicks with a scary degree of accuracy, and be a "really good driver.. yeah.. yeah... really good driver." 

His name isn't Rainman. He's never watched an episode of Jeopardy. We don't buy his underwear at K-Mart. 

His name is Malcolm. And he is not low-functioning, severe, or even classic. He is High-Functioning. 

So. What does that mean? 

Well.. let's first start with the basic meaning of Autism... 


  [aw-tiz-uhm]  Show IPA
1. Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication,excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.
2. A tendency to view life in terms of one's own needs and desires.

Interesting. I don't see anywhere in the definition, why, by the way, I did NOT write, that Autism is related to being Mentally Retarded. The next person who uses that particular phrases near, around or about Malcolm, will find ME, in their face, telling them exactly how ignorant that particular phrase makes them look. 

High functioning simply mean that some of these symptoms, are less severe. Individuals with high functioning autistic disorder may want to interact with other people. However, they don't know how to behave correctly. They have a difficult time understanding abstract language. For example, someone who makes a joke may be taken literally in conversation, causing confusion and miscommunication.

This, however, does not make his "Needs" any less necessary, required, vital or urgent. See, we still have a laundry list of symptoms that we have to deal with...

Symptoms that are indicative of high functioning autistic disorder are:
  • Motor skill delay
  • Obsession with specific items or information
  • Reactions to stimuli such as smells, textures, sounds and sights
  • Rigid need for rules and routine
  • Average to above average intelligence
  • Perseverative thought
  • Lack of eye contact
  • Difficulty organizing time
  • Inability to manage conflict
  • Anxiety in crowds
  • Speech delays
  • Language impairments
While you, who live outside of our little bubble might only witness the speech delays, or his 'slurred' speech, and an occasional meltdown, do not think for one moment that we do not struggle, at home, in private, out of your line of sight, with the rest of these things. 

In Malcolm's case.. He had HUGE Motor skill delays. Obsession over specific items? It's usually the cause of a HUGE fights between him and his brother. Reactions to stimuli? Why do you think we DON'T go to movies? Or the mall? or to any place that is exceptionally loud? Need for routine? Yes. There's a reason getting ready in the morning right now, as we're headed into summer, and warmer weather is a challenge. He only wants to wear his blue polar bear shirt. And he refuses to do his homework until his cup, filled with chocolate milk, and a peanut butter sandwich is in front of him. He only uses his green pencil. I have no idea what we're going to do when that green pencil is 1 inch long, and can't be sharpened any more. Are you getting the idea yet? This is all stuff you don't see.. because you don't live in our house and see him everyday. High Functioning Autistics, for the most part, are able to 'hold it together', when outside in 'our' world, when they know they need to. At school. While spending a night away from their parents. Etc. At home though, he's safe to retreat back into HIS world. A world where sounds are too much. Textures make food inedible. Looking others in the eye is too distracting from what they're saying. 

Am I getting through to you yet? To understand a high functioning autism, it's important to know the symptoms of the more classic or severe types that are not evident in this milder form of the disorder. High Functioning Autistics typically display:
  • No physical or outward appearance of the disorder
  • May be able to perform most physical tasks without difficulty
  • Do not appear to have speech impediments or developmental delays
  • React appropriately when touched
  • No cognitive delays
Especially when out, in those places where they know they have to 'hold it together'. 

Again, let me reiterate. Just because they CAN hold it together, doesn't mean that they AREN'T Autistic. Doesn't mean that they can turn Autism on and off. And it certainly doesn't negate their very real "needs".  Therapies. Routine. Doctors. Doctors. More Doctors. Awareness. Support. Patience. Family. Love. Steady, reliable and consistent relationships. 

Here are some things they DON'T need. Pity, Excuses, Isolation, People who "keep their distance", Stares, Comments, Spankings, Broken or Empty promises, Being ignored. Ignorance, Bigotry and Fear. There's many more things I could add to this list, but it would go on forever, and I'm getting tired. 

Ultimately, I'm writing this for one simple purpose. Treat Malcolm with the dignity, respect and love he deserves. You don't have speak in hushed tones around him. You don't have to relegate him to one corner of the house. You don't have to be afraid that he's going to break everything in your house, 'freak out' your kids, or pee his pants in the middle of your kitchen. In fact, it's probably YOUR kids that will freak him out, and unless you lock him out of the bathroom, he's completely potty trained. Just be aware of his "needs". Don't startle him. Don't turn the tv or radio up to 11. Don't expect him to eat the 11 course gourmet dinner. He's quite content with Mac N Cheese and other "yellow foods". Oh... and above all... Don't treat him like he's stupid. He's not. Chances are, he's a lot smarter than most of you reading this. I know he's a lot smarter than the one writing this. 

So yes. When I advocate and fight for funding, or services for ALL Autistics, because their "needs" are costly, please make NO mistake, I fight for Malcolm, first and foremost. And above all, make no mistake, the "needs" of Malcolm, and every child, teen and adult like him, HFA, are real NEEDS. 

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