Autism and Learned Helplessness

The rate of statistics for children identified with autism was once 1 in 10,000. That was in 1990. Then, in 2000, it was revised to 1 in 500, followed by 1 in 166 several years later. As of 2007 the latest estimate is 1 in 150 children (and 1 in 94 boys). Certain public awareness campaigns have manipulated the numbers to suggest that every 20 minutes a child is newly diagnosed with autism. While this may be debatable, one thing is certain: children grow up. Quickly. It is currently estimated that there are over 1.5 million autistic Americans but that quote has the potential to expand as the “every-20-minute” kids blossom toward adulthood. Not only is our nation ill-equipped to serve these young adults, we’re divided about the implied financial burden thought to correlate with the perpetual care of such individuals, said to be billions.

I’m a strong proponent of the principle “prevention instead of intervention.” Not only do we wish to educate, support, accept and integrate people with autism fully and as early as possible, we also need to practice “prevention instead of intervention” with parents, caregivers, educators, law enforcement and the medical community. What does this mean? In the midst of applying a maze of treatments, therapies, medications and methodologies, it is imperative that we perceive the autistic one as capable and competent. In other words, it is our conduct that shapes the future for each child with autism and how he or she perceives their place in the world. In my work as a consultant, I often observe what borders on psychological abuse in the manner by which parents, grandparents, educators, therapists, doctors and others describe the one with autism in front of them! To some, the child is a patient…a subject…a “behavior problem”…a thing.

Imagine having an intellect fully intact, having limited means to communicate such, and enduring constant put-downs and complaints about how difficult you’ve made others’ lives—simply by being who you are. It’s no wonder that so many with autism grapple with anxiety, depression, and post-traumatic stress disorder—mental health experiences we’ve created and could have avoided if only we changed our behavior.

Additionally, when we don’t presume intellect and perceive people with autism as perpetual children, we lower our expectations of them instead of raising the bar and challenging their intellect. Those who are anxious, depressed or suffering from PTSD may acquiesce and find complacency in being babied—it’s easier and takes less energy. Still others engage a game of one-upmanship with opposing neuro-typicals by creating regularly explosive drama as a divertive amusement—this is reflecting back what others project. And then there are those whose identity is so closely aligned with an overprotective parent that they become co-dependent to the point of being unable to make decisions for themselves—progress is developmentally retarded, owing to inextricable enmeshment in the parent-child relationship. By not presuming intellect, we are creating an autistic culture of learned helplessness. This will make the difference between forthcoming generations of productive, tax-paying citizens or citizens who tax the system as “burdensome.”

We may use what is considered standard achievements (a job, a place to live, a relationship) as the measuring stick of success for neuro-typicals. In autism, there are many variables that conspire to hinder what gets measured for success such as acute sensory sensitivities, delays in thought-processing and speech articulation, or challenges in motor coordination. This makes the concept of traditional higher education or viable employment inequitable.

There have been many famed individuals and creative thinkers who have made significant contributions to our culture and who have been rumored to be on the autism spectrum (likely with Asperger’s), Charles Schultz, Thomas Jefferson, Vincent Van Gogh, Alfred Hitchcock and Bill Gates among them. The argument may be that they are all indeed “high-functioning.” But in autism, the perception of “high” and “low” functioning is limited only to the physical if we presume the cerebral intact. This will require us to think in a manner that is inspired and to re-envision employment opportunities that will build upon individuals’ unique areas of expertise; focus upon interesting, detail-oriented work; identify quiet, gentle environments; not be deadine-specific; and use virtual online employment or self-employment options.

Historical job opportunities for people with disabilities tend toward those no one else wants (or jobs others will only work temporarily). It’s degrading to be thought of exclusively in terms of janitorial clean-up when innovative thoughts are begging to burst forth. Helen Keller presented outwardly as among the most severely impaired yet she was brilliant for what she gained the world. Gathering together in support, seeking communication alternatives to speech, and making compassionate accommodations for each individual with autism—regardless of what their level of functioning purports to be—is not only necessary, it’s imperative. It’s what will distinguish progressive, innovative productivity from learned helplessness.

© 2008, William Stillman
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  • http://twitter.com/TwiMommi Robin

    I catch myself at times discussing my daughter infront of her, but everytime I do, I realize the things I am saying, I would say in front of her even if she was verbal. The difference would be that she would have the ability to interject. I don’t see her as a burden in the least bit though, so I do have an advantage in that area.

    I do fully agree that it is easy for parents to fall into the trap of disabling their child, with low expectations, especially when they are unsure of how much the child is actually grasping.

  • Julie

    My son is 8 years old and has Aspergers. I try my best not to discuss his condition or his behaviour in front of him unless it is appropriate, but am constantly amazed at the way professionals seem happy to raise it when he is in the room (especially before he knew anything about it) – he is so very not stupid, and they know that, but still treat him as though he is when it comes to this.

    I know that it seems easier to give in to your child when they don’t want (or do want) to do something that doesn’t fit in with everybody else, but in the long term it’s really not doing them any good at all, just for the sake of some peace and quiet now. I fully expect my son to leave home at a reasonable age, hopefully go to university, certainly have a satisfactory working life at the very least, and have friends and hopefully relationships in adult life. After all, his father does, and they are like clones of each other at times. If I don’t make the effort now to teach him how to deal with the world, how is that ever going to happen?

  • http://twitter.com/thedgoddess The Domestic Goddess

    Excellent. I really try to discourage folks discussing Ian in front of Ian. I tell them, “He may not speak but he understands EVERY WORD YOU SAY.” Meaning, don’t be a moron and say something awful in front of my kid, yo.

  • http://www.facebook.com/profile.php?id=1151337826 Debbie Dunehew Krencicki

    My son is very high-functioning and ever since his diagnosis, we have really tried to educate ourselves about what he may be experiencing. We’ve told him that he has a form of Autism, that many famous people have been able to achieve great things despite (or maybe because of) their Autism and that he is really smart and can do great things, too. In fact, the other day he asked my husband and I, “How come you guys are always talking about Autism? Why are you so obsessed with Autism?” I told him we’re just trying to learn as much as we can so we can help him have a successful life. We do talk in front of him, but always make an effort to be positive about it. I wouldn’t have him any other way than he is. He’s perfect.

  • Ross Mannell

    The blog post is a very good read. There seems to be the assumption in the community where an apparent variation from the norm means a person is less capable of feeling or understanding. Many times I’ve seen and heard people adopt a patronising tone when they meet cerebral palsy sufferers, those in wheelchairs and those within the autism spectrum. The assumption on meeting someone new should be one of respect, assuming intelligence and speaking as though they are there and at least equals.

    “Prevention instead of intervention” is a good catch phrase. It’s true for many child raising situations. As we watch them grow physically we have to allow them to grow emotionally and intellectually.

  • http://www.jolysebarnett.wordpress.com Jolysebarnett

    My son, 12, is autistic (not Aspie). He is aware of his autism and that it can make things harder (I should shape that to be “different” shouldn’t I!) for him, but that everyone has weaknesses they have to overcome or adjust to. I cannot imagine talking about his autism or behaviors in front of him, it’s just a part of him like my quirks are a part of me. I don’t appreciate people harping on my issues either and certainly wouldn’t want them discussing me like I’m not there.

    He’s verbal, although he gets very frustrated at times with communication and shuts down. We are trying to learn what interests him to help guide him (as we did with his older neuro-typical sibling) toward career choices in the future. Not easy, but as parents we didn’t sign on in life for “easy.”

    Thanks for this thought-provoking article. It reminds me to view my child’s autism as a difference, not a disability (although to a neuro-typical like me, it can present as one). I love him dearly, and am thankful he speaks up for himself enough that I don’t “baby” him. That was the hardest part for me as he has transitioned into puberty.

     

  • Patricia (Caftan Woman)

    My son has a dual diagnosis of autism/developmental delay.  When another meeting is called with professionals and they request my son’s presence for observation, I always point out that he doesn’t like being the subject of conversation.  In other words, it is only common courtesy.  How would you like being discussed in both such a detailed and cavalier manner?

    Certainly my son has limits, we all have limits.  What he can’t do is distressing, but what he can do is amazing.