Trigger warnings: I mention ABA, Autism Speaks, and the abuse/murder/infantilization of disabled people in passing.
Stay away from Autism Speaks. Seriously. I've talked about what's wrong with them from the perspective of the autistic person before, and so have other people. But they won't actually be good for you either. They will make you feel better short term, and you will meet other parents in the same boat as you. The cost, however, will he always seeing your child through the lens of tragedy that they portray autism through. I have said how it's not about you, but about what's best for your child, but the two desires agree when we talk about the need to stay away from Autism Speaks, because they will make you feel hopeless just as much as they will make your child feel broken and wrong.
Approach all therapies with caution. The biomedical ones are generally useless, and sometimes actively dangerous. Applied Behavioral Analysis (ABA) is not a therapy itself, and the therapies based off it range from very good from very bad, as do the practitioners. One parent talks about how she uses ABA here, and it's one example of using it safely and helpfully. Diet changes only help if there is a medical need for them - removing gluten from the diet of an autistic child who does not have a gluten allergy is hopefully simply useless, though the part where many autistic people are picky due to sensory issues (not just kids, by the way -I won't come near mint, anything carbonated, or plain eggs) means that further restricting their diet could get messy. Essentially, ask yourself if it would be considered OK to do something to a non-disabled child. If the answer is no, chances are that it's still not OK to do, and that calling it therapy doesn't make it OK.
Listen to autistic adults. None of us will be exactly like your child, just as no neurotypical adult will be exactly like your neurotypical child. That's because we're not your child. We are adults. It's also because no two people are exactly alike. We are no exception. In any case, if you talk to many of us and listen to what we have to say, or if you read many of our blogs (typing is often more accessible than speaking - there are those of us who do not speak but do have blogs) you can find what things we wish people had just let us do in peace, what we liked,what we didn't like, what we wish we had gotten help with, what we wish people had known. (Wishing people had let us stim in peace is a pretty common one.) It won't tell you exactly how to raise your child, but listening to us will give you some ideas of what is helpful and what society only wants you to think is helpful.
Listen to your child. We, the autistic adults who have been autistic children and remember it, know a lot about your child's experiences. However, we do not know as much about them as your child does by virtue of simply being your child and living them every day. Your child may or may not speak, but making sure there is some form of communication up and running, one where your child can say "NO!" and "Stop!" at need, is extremely important. The only things that you should be able to let rank higher in good conscience are things that are required for staying alive at all, really. Food, water, shelter, medical care, that kind of thing. Because your child has to be able to tell you what's going on. That doesn't mean your child has to speak, by the way. Behavior is communication. If one kind of flapping means happy and another means hungry and another means no / stop and screaming comes next if the no / stop flap is ignored, that is a rough system of communication. Typing can be communication. That's the idea behind a lot of AAC. Essentially, get some form of communication running and pay attention to whatever messages your child sends.
Remember that your child will grow up. You didn't think we autistic adults sprung out of our parents heads fully formed like Athena, did you? We were kids, and then we grew up, sometimes despite the best efforts of authority figures. (Some of those best efforts were attempts to keep us eternally children by not allowing us control of our own lives. Some were keeping us from physically developing using surgery or neglect. Some were attempts to kill us or let us die. It's not pretty.) The point is that your child will grow up. Your child might always the same supports she needs now, or she may need fewer but still significant supports, or minimal supports, or maybe no supports beyond what you need if you examined your life honestly. You won't know until that time comes, and it's besides the point anyways. The point is that getting to control your own life is generally considered part of growing up, and you need to let that happen, just as you would with a neurotypical child.
The fact that your child is autistic does not automatically mean that she can never be left alone. You know how the are some neurotypical ten year olds you would leave home alone for a couple hours and some neurotypical twelve year olds you wouldn't leave alone for five minutes? Autistic children vary the same way. Plus there is the part where a lot of us have weird sleep schedules, which means that you won't be getting enough sleep until it is safe for her to be the only one awake at home if she's like that. Being autistic is for life, so being safely alone is pretty useful. And yes, it can be done. I know one person who started going outside to do laps around buildings that were too loud when she was eight. I was able to go to China alone when I was sixteen. I know of a non -speaking autistic woman who lives in her own apartment. Point is, autistic and unsafe to leave alone are two different things, and you should keep that in mind.
Get enough rest. Schools have a tendency to be problematic for students with disabilities, so you'll probably be doing battle with them on a fairly regular basis. That's tiring. You have a child to raise. That's tiring too. Society is going to have problems with your kid. Dealing with those problems is also tiring. The statistic about autism ruining marriages is completely false, but that doesn't mean getting enough rest isn't important. It's still important to get rest because that's always important. Just remember that having an autistic child doesn't make it any less important.
Stay away from Autism Speaks. Seriously. I've talked about what's wrong with them from the perspective of the autistic person before, and so have other people. But they won't actually be good for you either. They will make you feel better short term, and you will meet other parents in the same boat as you. The cost, however, will he always seeing your child through the lens of tragedy that they portray autism through. I have said how it's not about you, but about what's best for your child, but the two desires agree when we talk about the need to stay away from Autism Speaks, because they will make you feel hopeless just as much as they will make your child feel broken and wrong.
Approach all therapies with caution. The biomedical ones are generally useless, and sometimes actively dangerous. Applied Behavioral Analysis (ABA) is not a therapy itself, and the therapies based off it range from very good from very bad, as do the practitioners. One parent talks about how she uses ABA here, and it's one example of using it safely and helpfully. Diet changes only help if there is a medical need for them - removing gluten from the diet of an autistic child who does not have a gluten allergy is hopefully simply useless, though the part where many autistic people are picky due to sensory issues (not just kids, by the way -I won't come near mint, anything carbonated, or plain eggs) means that further restricting their diet could get messy. Essentially, ask yourself if it would be considered OK to do something to a non-disabled child. If the answer is no, chances are that it's still not OK to do, and that calling it therapy doesn't make it OK.
Listen to autistic adults. None of us will be exactly like your child, just as no neurotypical adult will be exactly like your neurotypical child. That's because we're not your child. We are adults. It's also because no two people are exactly alike. We are no exception. In any case, if you talk to many of us and listen to what we have to say, or if you read many of our blogs (typing is often more accessible than speaking - there are those of us who do not speak but do have blogs) you can find what things we wish people had just let us do in peace, what we liked,what we didn't like, what we wish we had gotten help with, what we wish people had known. (Wishing people had let us stim in peace is a pretty common one.) It won't tell you exactly how to raise your child, but listening to us will give you some ideas of what is helpful and what society only wants you to think is helpful.
Listen to your child. We, the autistic adults who have been autistic children and remember it, know a lot about your child's experiences. However, we do not know as much about them as your child does by virtue of simply being your child and living them every day. Your child may or may not speak, but making sure there is some form of communication up and running, one where your child can say "NO!" and "Stop!" at need, is extremely important. The only things that you should be able to let rank higher in good conscience are things that are required for staying alive at all, really. Food, water, shelter, medical care, that kind of thing. Because your child has to be able to tell you what's going on. That doesn't mean your child has to speak, by the way. Behavior is communication. If one kind of flapping means happy and another means hungry and another means no / stop and screaming comes next if the no / stop flap is ignored, that is a rough system of communication. Typing can be communication. That's the idea behind a lot of AAC. Essentially, get some form of communication running and pay attention to whatever messages your child sends.
Remember that your child will grow up. You didn't think we autistic adults sprung out of our parents heads fully formed like Athena, did you? We were kids, and then we grew up, sometimes despite the best efforts of authority figures. (Some of those best efforts were attempts to keep us eternally children by not allowing us control of our own lives. Some were keeping us from physically developing using surgery or neglect. Some were attempts to kill us or let us die. It's not pretty.) The point is that your child will grow up. Your child might always the same supports she needs now, or she may need fewer but still significant supports, or minimal supports, or maybe no supports beyond what you need if you examined your life honestly. You won't know until that time comes, and it's besides the point anyways. The point is that getting to control your own life is generally considered part of growing up, and you need to let that happen, just as you would with a neurotypical child.
The fact that your child is autistic does not automatically mean that she can never be left alone. You know how the are some neurotypical ten year olds you would leave home alone for a couple hours and some neurotypical twelve year olds you wouldn't leave alone for five minutes? Autistic children vary the same way. Plus there is the part where a lot of us have weird sleep schedules, which means that you won't be getting enough sleep until it is safe for her to be the only one awake at home if she's like that. Being autistic is for life, so being safely alone is pretty useful. And yes, it can be done. I know one person who started going outside to do laps around buildings that were too loud when she was eight. I was able to go to China alone when I was sixteen. I know of a non -speaking autistic woman who lives in her own apartment. Point is, autistic and unsafe to leave alone are two different things, and you should keep that in mind.
Get enough rest. Schools have a tendency to be problematic for students with disabilities, so you'll probably be doing battle with them on a fairly regular basis. That's tiring. You have a child to raise. That's tiring too. Society is going to have problems with your kid. Dealing with those problems is also tiring. The statistic about autism ruining marriages is completely false, but that doesn't mean getting enough rest isn't important. It's still important to get rest because that's always important. Just remember that having an autistic child doesn't make it any less important.
Wow--YES to the "safe to leave alone."
ReplyDeleteI was completely fine being left alone for short periods of time (half an hour or so) when I was 5 or 6. SOME autistic kids have no sense of danger or boundaries, but this is not universal; autism is not a synonym for "no sense of caution or personal safety." There are parents online who generalize about this, and I find it really dangerous to kids for whom it's not true...who in fact have over-developed senses of fear and caution, who would benefit from the responsibility for themselves or engaging in healthy exploration. It's a recipe for a child never having any privacy or alone-time, which are necessary to learning to be responsible for yourself. You just have to be familiar with your own kid's level of good sense.
^Word. We're people, not time bombs..
ReplyDeleteAnother thing that stuck out for me was people and supports. What never occurs to most people is that neurotypical people also use supports! The self-proclaimed "autism community" doesn't seem to have the empathy/theory of mind/honesty to appreciate this. What makes the "able" so able? It's simply that those considered "able" are those whose needs have been best anticipated and provided for by their society. We autistics often have different, less common needs. They are functioning in their ideal environment, and we are dealing with one that is far from ideal or easy from us. High-functioning neurotypicals don't have to ask for additional supports because they are automatically given what they need - but apparently, it is burdensome (and this is elevated to an issue of morality! whence comes the eugenic talk) for the rest of us to reasonably expect most of our needs to be met, to have an environment we can live in without undue difficulty.
They talk about the cost of having autistics in a society. What is never mentioned is the payoff that comes from providing us with the tools we need - the astonishing, earth-shaking contributions autistics make (and have always made) to every field, from art to philosophy to medicine to science to spirituality. They don't bother to consider how much it would benefit themselves, even, if more of us were able to be in environments that support and foster our abilities. They are too busy being scared of us..
THANK YOU for noting "Applied Behavioral Analysis (ABA) is not a therapy itself, and the therapies based off it range from very good from very bad, as do the practitioners. One parent talks about how she uses ABA here, and it's one example of using it safely and helpfully."
ReplyDeleteI am an autistic adult and 2 of my 3 kids are autistic. Because of negative attention ABA receives, I never looked into it. However, after trying several schooling types for my 9 - now 10yo son who needs more supports, we tried homeschool, private/Montessori and public w/horribly poor results. The worst of which was his dissatisfaction. So we tried a school that uses ABA - positive reinforcement model. I had many meetings with the school admin and staff, visits, etc... before enrolling him. I was adamant that punishment play no part and made it very clear that my son did not need 'fixing.' That he be allowed to be his amazing autistic self. Admin assured me that this was their philosophy, so we enrolled him last fall. Stimming is acceptable, eye contact is not forced, and punishment is never a reinforcer. It is the only school my son has happily gone to. He uses some language, but was able to choose his communication device (iPad) and Apps and he is being taught to use them. Which made us ecstatic - other school wanted to use only ST and we were never given option of Asst Tech. At his new school, he has shown more progress socially and academically than in any other setting we tried. Most importantly: HE likes it there! HE is happy there :)
So I wanted to thank you for pointing out that ABA based therapies used safely and helpfully, and with good practitioners, can be a good thing. In our son's case he is happier and much more self-confident than he's ever been!
In the 60s precocious loners were considered pretty typical in my family. So i was helped but not changed. Listened to but not told. Got married at 28, started communication counseling at 35 but only diagnosed after 50.
ReplyDeleteBiggest regret that I never was given the insight into my own situation in a positive uplifting manner - like "some things will take more time. but you'll get there". Would have taken care of lots of worry
Do what you should do with all kids: encouragement is the best medicin. with lots of that you can make many mistakes.
Very thoughtful blog. Inspired me to add my own experience at http://hansaspergerjunior.blogspot.com/2013/06/supporting-your-children-with-aspergers.html
ReplyDelete