Nov
4
Sorry to my Autistic audience… this post is meant for the non-autistic parents in my audience.
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This is a conglomeration of thought based on several things I have read and conversations I’ve had recently, and quite honestly, for the past few years. Kassiane‘s blog post was repeated on TPGA and speaks about self-advocacy and autonomy even at a young age. Laurent Mottron’s commentary in Nature has been widely circulated with a quote from Dr. Mottron stating
As a clinician, I also know all too well that autism is a disability that can make daily activities difficult. One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.
**bold emphasis is my addition
A recent conversation with a person discussing ASANs Navigating College handbook lead to talking about how to get something similar going for parents to help their child be more independent in preparation for transition. Then there are my continual lingering thoughts about nonPariel, which in my opinion is nothing more than a day hab, sheltered workshop with plans to include an onsite group home/institution for those considered by those who created it to be “high functioning.” If you’re wondering what all of these have in common, prepare to be enlightened.
First I will start with the statistics that Dr. Mottron said. 80% of all Autistic people are still dependent on their parents. I’m sad to say, I’ve got anecdotal evidence of the same.
Then on to nonPareil which was created by parents who were worried about their children’s futures. They don’t expect them to have hopes for independence so started a program directed to where they will be at transition age.
Next is the discussion about a guide for parents to help create independence. So many parents realize their 17 yr old is about to be 18, and adult and they scamper to find what they can do to help their child. This is a discussion I’ve had with more than one person over several years.
Last is Kassiane’s blog post about showing autonomy to a young boy 9-10 yrs old. How he was never shown that, which is not that uncommon.
I worked for a company into this April where preteens and teens with “HFA and AS” got together for social activities twice a month. So many times, parents said their children couldn’t be trusted to help cook. One boy even hit himself in the face when he was upset with himself and people let him use that it was a part of his condition.
What is this all getting to? Are you a parent that is helping your child be independent or are you standing in their way? If your child is in middle or high school, are they allowed to make mistakes like their peers are? If your child is in elementary school, are your children allowed to make any of their own food?
Do your children have responsibilities that they must do? And how about entrusting them with money? If your child is young, does he have to put the dishes in the dishwasher? If your child is older, does he know how to do his own laundry?
These are all life skills that really build onto each other. So when I hear a parent has waited until their child is 15, 16, 17 to ask “What does my child need for transition?” I always think that the parent has already waited too long. When parents say their child can’t do something, I always ask why. If it’s maturity, then what are you doing to increase his/her maturity?
Like I’ve said before, we use ChorePad HD to help with all sorts of skills. But it doesn’t serve just as a reward system. There’s saving and practicing and growth to learn new things. Daniel, who most would think couldn’t grasp the delayed-reward system, does.
So why not try it with your child? Even if you don’t have an iPad, you can go pick up tickets at the dollar store (Dollar Tree has some). Like those older carnival style tickets. And you get to give tickets for things you want to praise, and remove (if your child is ready) for things that were harmful or disrespectful. It’s the same idea. They can save up to something large while still spending for small things, like 30 min on games/the computer. (A good way to recoup those tickets is adding a goal of “No protest getting off electronics which teaches another skill. And make sure you have a timer that they can read!)
If this sounds preachy, I apologize. But part of having a self-advocating, autonomous adult is allowing them to make their own mistakes, teaching them skills to increase their independence and allowing them to make their own decisions.
Seriously, stop confusing Aspergers with real Autism. Real Autism is something that can’t be controlled, it’s not “mistakes” either. What you’re describing is clearly a discussion only for those parents of young people who have Aspergers. Excepting that Aspie’s don’t hit themselves in the face – that’s autism, and it IS part of the disorder. That’s not a “mistake” that can be fixed. You’d know that if you were a non-Autistic person who care-gives for someone who really is Autistic. But see — we live in a confused society that has bought into the mis-classification of Aspergers as Autism, throwing it all onto the same “spectrum.” And this is the result: advice to parents of kids who really -are- Autistic to try and have them living on their own. THAT’S INSANE and it would only lead to ABUSE. Real Autism creates a dependency that can’t be changed. Not in those who are currently adults who have Autism, who aren’t eligible for programs that only take kids, and who’s parents/care-givers can’t afford those costs and don’t qualify for financial aid either. Honestly, I’ve had it with this whole thing. My brother is a true Autistic. I have Aspergers. Trust me, I am NOT Autistic. I suffer from -none- of the many symptoms he does, nor does he suffer from the kinds of symptoms I do. He’s actually quite social — but the physical suffering for him from within is beyond belief. But what would you know or care, right? In your opinion, it’s all the same, right? After all, it’s on the same “spectrum” right? Not really. Not when you’ve lived with the stark differences that could NEVER be confused with each other for nearly your whole life between yourself and a sibling. I’ll say this: my brother will never have what it takes to do the stuff you mentioned. If you knew him, you’d understand this instinctively and with more evidence than you could possibly imagine. Good grief. It’s no wonder the numbers of diagnosis have soared… Everyone’s on the freak’n spectrum, according to the Dr.s who diagnose this! Are you unsure of whether to send a birthday card or not? You must be Autistic!!! Oh brother.
I’m allowing this through to show how it’s wrong to make assumptions.
@Chewbacka Grizelda – your rant is inappropriate and subsequently flawed. There are Autistic people who live the life they want due to improvements in communication and technology.
Yes, there are severe Autistics out there who are not able to do everything listed in this article. However, with the right technology and accomodations, most Autistics can live the life they want. There are examples out there; yet if you compare more severe Autistics to your brother, we all become stereotyped under your incorrect assumption.
In time, all Autistics will be able to communicate with others. Technology simply has not caught up to all of us yet. Don’t doom your brother – or others – to a life that is not their choosing.
I like how you handled the rant, Melody — I would have been sorely tempted to delete it. That person should meet Amanda Baggs, who lives on her own with an attendant, or perhaps Sue Rubin, who does as well. Besides, “experts” are severely affected by their personal prejudices/beliefs for labeling and rely on how we look on the outside, which is heavily affected by our age, how tired we are, sensory stresses, and so forth. My early-childhood self in 1979 was nonverbal autistic, at 13 I spoke & was in honors classes but judged by the government to be incapable of living in society alone — yet in many situations I now seem like a quiet, slightly odd non-autistic.
To get back to your article: I wholeheartedly agree, and even though I was given far more autonomy than most autistic kids, I often wish my mother hadn’t been so quick to shelter me when I was growing up. Each stage that I was restricted from a “normal” activity led to an inability to handle a more advanced version of it (and terror that I must be doing something “wrong” to even try) years later when I finally was allowed, which in turn caused more problems down the road in some way. That I tend to gradually lose the ability to do math, understand what’s said/written & speak without a script as my stress/anxiety levels increase makes things that much worse.
For example, when I was a pre-teen, a popular activity was for kids to bike to a deli or convenience store, but I wasn’t allowed to go. So at 16, when I went to a deli with some classmates for lunch, I was terrified the entire time that I was about to get yelled at or thrown out for not being with an adult or some unpredictable offense like looking at sodas without buying a sandwich first; I was too stressed to read or count enough to know whether the $10 Dad gave me was enough for a can of soda (let alone food). That kind of scenario had to play out several more times all the way through college before I had visited enough kinds of places to know how to handle it.
This article gives me hope that I have done *some* of the right things in preparing my daughter for adulthood. She can do her own laundry, fix simple food, and is a fierce self-advocate. As I weather her emotional storms, meltdowns, and consequences of the mistakes I have let her make with friends, classwork, and money, I will tell myself that I am helping her grow up independent! Love her so much and want to protect her. Glad that *I* might be actually helping her by NOT protecting her from all this “teenage pain.”
We all need a good talking to now and again. I do see a lot of what you’ve written is applicable in our situation. I appreciate that you let the rant through as well. It shows that you’re listening and allowing for different points of view (diversity).
Dixie