Q&A #6: The Talk
A: How/when did you find out you had autism? What was your reaction?
Here's why I'm asking:
My son is 7, almost 8. He was diagnosed with high-functioning autism a few years ago, but we couldn't communicate with him at that time. He's made huge progress since then. Anyway, I've never actually told him he has autism. He's never asked about it, either, or shown any signs of realizing he's different from other kids. BUT...I know the time is coming. It's talked about in front of him, etc. The trouble is, I don't really know how to explain it to him in terms he'll understand. Any advice?
-Panicked Mama
A: Well, first of all, don't panic! (Also, always have your towel with you.) Sure, your son's going to have to deal with a lot of crap from a world that thinks autism means "worthless existence", but what you teach him--not by your words, but by your actions--is going to be what sticks with him more than anything the rest of the world will tell him. Whenever you treat him like a valuable, competent, precious little human being, you teach him that if somebody tries to tell him that disability is shameful, that person is wrong, wrong, wrong and he doesn't have to listen to them. Your actions will always speak louder than your words. So, in a way, maybe you have already taught him a lot, even while he wasn't so good at talking.
My mom was that way--teaching by actions, rather than words. In fact, her actions and her words don't really match. My mom is an occupational therapist, and like many health-care professionals, she's afraid of becoming disabled and pities those who are. That's what she says, anyway. But the way she acts kind of goes against that. She works in a nursing home, and she'll fight tooth and nail to get her clients what they need. She once told me that she got into a pretty big mess with her co-workers because she wanted to request a cushion for one of her clients to put in a rocking chair, and wouldn't take no for an answer when the directors told her they didn't have the budget. What a simple thing to ask for!--and yet, many health-care workers would assume that they know best, the client doesn't have a clue, and it's all about either fixing people so they're normal, or warehousing them if they can't be fixed.
Mom never caught on to that idea, however much she talks about disability being so scary and pitiful. She just treats people like people. She doesn't care if you're the director of the nursing home or the crabby old Alzheimer's patient that nobody likes; she'll put you on the same level as anybody else. She's no angel and she'll tell off the crabby old Alzheimer's patient as well as the nursing-home director; but, point being, she won't kowtow to one and look down on the other. That's what my mom taught me, without ever saying a word.
I should've been diagnosed by the time I entered school. I've talked to my mom about what I was like when I was little, and I'm pretty sure I was obviously autistic. While I learned to speak on time, I had problems with original conversations; I'd just repeat the same scripts over and over. For a long while--until I was three, maybe even four--I didn't realize you used speech to communicate. I just figured you said certain things at certain times, and in response to certain prompts. But my mom read to me--a lot--and pretty soon I realized that words meant things. Having the words right there on the page in front of you really helps; it's much more concrete and you don't have to trust your memory to remember all those slippery sounds. I know I was a fluent reader--and a reasonably competent speaker--by age four. I didn't get back-and-forth conversations until about nine years old, and tone-of-voice and colloquial speech took until my late teens. I still get very formal when I have to communicate precisely.
I had tantrums--meltdowns--often, and couldn't be comforted. Mom tells me I once had a tantrum because I didn't want to take my coat off; I can only assume that the pressure of the coat felt good. There were many like that--a daily occurrence. I used to run in little circles until I could calm enough to sleep. I had imaginative play early on, though it was repetitive and a little odd; I used to perform "surgery" on my dolls because I was fascinated with appendectomies! We still have the cutest pictures of toddler me bandaging up my dolls... I didn't have friends as a child, and didn't really make friends with anyone until the sixth grade, when I was "adopted" by a couple of other outcasts; and then not again until college. Until I was about ten years old, I wasn't really aware of the existence of other children (I mean, I knew they existed; I just didn't care to interact). Then, I tried to connect, failed, and gave up on it because many other things were so much more interesting. Today I am an introvert with a few close friends, and not at all lonely.
I was in the sixth grade when Asperger syndrome was first added to the DSM. This meant a lot not just for Asperger's but for autism in general, because with the DSM-IV, it became well-known that autism could be mild and not too obvious. It could be diagnosed in children like me, who could talk fluently and do schoolwork competently, but had problems with socializing, were extremely sensitive to the world, became obsessed with specialist subjects, and still had to be prompted to comb their hair or take a shower.
But I wasn't diagnosed--not when I was a toddler, and not in the sixth grade. In fact, I wasn't diagnosed until I was twenty. I had tried to leave the house and go to college, but my self-care and other skills still weren't up to snuff. I became very stressed out and depressed, and things started to fall apart. My self-injury (a life-long habit) increased in frequency to the point that I was eventually hospitalized. I was diagnosed with borderline personality, PTSD, depression, and OCD and discharged with instructions to come in to the health care clinic for counseling and medication.
Like most college students I had taken a psychology class, and there I learned what Asperger syndrome was. I was intrigued because it seemed to me like I had a lot of these traits. Was it possible, I wondered, for a person to have a lot of Asperger's traits even when they hadn't been diagnosed? I mentioned it to my mom on one of my phone calls to her, and she replied, "Oh, they would have diagnosed you with that. But I didn't want you labeled." I had been taken out of school after the sixth grade and home-schooled, or sent to a small private school where most children had some sort of oddity.
That made me think; so on one of my visits to the clinic, after I had my monthly prescriptions I mentioned my mom's statement. Why did I have so many autistic traits, I wondered? And it turned out I had gotten very, very lucky: The nurse-practitioner who did medication appointments for me has a grown-up son with Asperger's, and she knew what to look for. She immediately hit me with lots of questions, which I answered as well as I could. We could both see the light bulb switching on above our heads. Autism, unlike borderline personality or OCD, actually fit--and fit well. (I was misdiagnosed with OCD and borderline; I had never had either one to begin with. PTSD and depression were correct, but both are now in remission.)
My first diagnosis was Asperger syndrome. I was moved around the spectrum randomly as each new psychologist had a different opinion; technically, my diagnosis should be PDD-NOS (atypical autism), but it doesn't matter to me which my label actually is, so long as it gets me the help I need to get through life and follow my dreams. Eventually I went through thorough neuropsych testing and received a report that showed me strengths, weaknesses, and evidence of both autism and ADHD. Neither one surprised me because by that point everyone was talking about one or the other.
My reaction to being diagnosed was, honestly, more of an "Oh, so that's what it is." I didn't feel panicky or disappointed; it was more like I'd just got the answer to a difficult math problem. I had already been labeled several times, and I was getting used to it. I had had my first depressive episode around age nine and been taken to counseling for it (the counselor was useless, but that's another story). I knew what depression was and the episode I had at twenty was my third, not my first. I disagreed with the borderline diagnosis and was glad to be rid of it. (I had been diagnosed with BPD solely because of my tendency toward self-injury, and had no other Borderline traits.) I had studied psychology quite a bit by that point and knew that neither mental illness nor developmental disability was anything to be ashamed of. So, when I was diagnosed with autism, my response was to do what I do when anything new comes into my life: Learn about it. I started with the local library and ended up trawling through the medical journals. And I learned a lot that even now helps me cope--live on my own, go to school. Some day I'll have a job.
Sometimes I'm annoyed with my mom for not telling me. I think, if I had been diagnosed as a child, I would have been able to access some of the services that would've helped me learn things earlier rather than muddle through teaching them to myself. I might have been taught how to clean a room, or keep myself clean; I might have learned how to match my clothing or have a conversation, or how close it's all right to get to somebody. I might have learned enough about how to keep my stress level down and my sensory system under control that I might not have ended up with depression and been hospitalized. I would have wanted to know, I think. But I can't get too angry at my mom. She thought that, by not telling me, by not having me "labeled", she was doing me a favor. She was mistaken, but it really wasn't her fault. My mom, and many other people in our society, truly think it's a horrible thing to be disabled and believe, for some reason, that it'll hurt a child to be told. The odd thing is, I ended up getting labeled anyway. I was labeled "stubborn" and "spoiled" and "dramatic" and "lazy" and "rebellious". I think I would have preferred "autistic", especially since those labels made me feel like it was all my fault.
You know how, a long time ago, people never told their kids that they were adopted; and then their kids found out as teens or adults and felt really betrayed? I think it's a lot of the same principle. People thought being adopted was a shameful thing, so they didn't tell their kids; but their attempt to "protect" them ended up hurting them instead. People think disability is a shameful thing, too, and they don't tell their autistic kids about their diagnosis.
But it's not, is it? I mean, your boy is just as good a kid as any other. You wouldn't trade him for the world. You love him, not his theoretical neurotypical counterpart. That's the important point to make.
It's easiest on adopted kids to grow up knowing. Similarly, it's easy for autistic kids to grow up knowing their diagnosis. Kids who know from early on just have it as a normal part of their lives--which it is, of course. Autism is part of MY normal life, even if it isn't part of most people's. I think the easiest way is just to talk about it, casually, like you would about anything else. Mention it as a neutral part of who he is. Explain that his autism is why he has a harder time learning some things and goes to get extra lessons. You might need to explain that it's not a disease; that his brain just grew differently. Make sure he knows you love him and you love everything about him, including his differences. He needs to know this stuff. Maybe at first it'll be something that isn't particularly interesting to him; he'll want to run off and play because it's not really relevant right now. But just expose him to the idea, so he knows about it.
Like I said, though, your words aren't the important thing. Your actions are. I'm not a mom, so I don't know near as much about that as you do. Being his mom, being the person he can trust, is much more important than wording things just the right way.
Q&As update Mondays and Fridays. Use the Q&A Submissions entry to submit your questions.
Here's why I'm asking:
My son is 7, almost 8. He was diagnosed with high-functioning autism a few years ago, but we couldn't communicate with him at that time. He's made huge progress since then. Anyway, I've never actually told him he has autism. He's never asked about it, either, or shown any signs of realizing he's different from other kids. BUT...I know the time is coming. It's talked about in front of him, etc. The trouble is, I don't really know how to explain it to him in terms he'll understand. Any advice?
-Panicked Mama
A: Well, first of all, don't panic! (Also, always have your towel with you.) Sure, your son's going to have to deal with a lot of crap from a world that thinks autism means "worthless existence", but what you teach him--not by your words, but by your actions--is going to be what sticks with him more than anything the rest of the world will tell him. Whenever you treat him like a valuable, competent, precious little human being, you teach him that if somebody tries to tell him that disability is shameful, that person is wrong, wrong, wrong and he doesn't have to listen to them. Your actions will always speak louder than your words. So, in a way, maybe you have already taught him a lot, even while he wasn't so good at talking.
My mom was that way--teaching by actions, rather than words. In fact, her actions and her words don't really match. My mom is an occupational therapist, and like many health-care professionals, she's afraid of becoming disabled and pities those who are. That's what she says, anyway. But the way she acts kind of goes against that. She works in a nursing home, and she'll fight tooth and nail to get her clients what they need. She once told me that she got into a pretty big mess with her co-workers because she wanted to request a cushion for one of her clients to put in a rocking chair, and wouldn't take no for an answer when the directors told her they didn't have the budget. What a simple thing to ask for!--and yet, many health-care workers would assume that they know best, the client doesn't have a clue, and it's all about either fixing people so they're normal, or warehousing them if they can't be fixed.
Mom never caught on to that idea, however much she talks about disability being so scary and pitiful. She just treats people like people. She doesn't care if you're the director of the nursing home or the crabby old Alzheimer's patient that nobody likes; she'll put you on the same level as anybody else. She's no angel and she'll tell off the crabby old Alzheimer's patient as well as the nursing-home director; but, point being, she won't kowtow to one and look down on the other. That's what my mom taught me, without ever saying a word.
I should've been diagnosed by the time I entered school. I've talked to my mom about what I was like when I was little, and I'm pretty sure I was obviously autistic. While I learned to speak on time, I had problems with original conversations; I'd just repeat the same scripts over and over. For a long while--until I was three, maybe even four--I didn't realize you used speech to communicate. I just figured you said certain things at certain times, and in response to certain prompts. But my mom read to me--a lot--and pretty soon I realized that words meant things. Having the words right there on the page in front of you really helps; it's much more concrete and you don't have to trust your memory to remember all those slippery sounds. I know I was a fluent reader--and a reasonably competent speaker--by age four. I didn't get back-and-forth conversations until about nine years old, and tone-of-voice and colloquial speech took until my late teens. I still get very formal when I have to communicate precisely.
I had tantrums--meltdowns--often, and couldn't be comforted. Mom tells me I once had a tantrum because I didn't want to take my coat off; I can only assume that the pressure of the coat felt good. There were many like that--a daily occurrence. I used to run in little circles until I could calm enough to sleep. I had imaginative play early on, though it was repetitive and a little odd; I used to perform "surgery" on my dolls because I was fascinated with appendectomies! We still have the cutest pictures of toddler me bandaging up my dolls... I didn't have friends as a child, and didn't really make friends with anyone until the sixth grade, when I was "adopted" by a couple of other outcasts; and then not again until college. Until I was about ten years old, I wasn't really aware of the existence of other children (I mean, I knew they existed; I just didn't care to interact). Then, I tried to connect, failed, and gave up on it because many other things were so much more interesting. Today I am an introvert with a few close friends, and not at all lonely.
I was in the sixth grade when Asperger syndrome was first added to the DSM. This meant a lot not just for Asperger's but for autism in general, because with the DSM-IV, it became well-known that autism could be mild and not too obvious. It could be diagnosed in children like me, who could talk fluently and do schoolwork competently, but had problems with socializing, were extremely sensitive to the world, became obsessed with specialist subjects, and still had to be prompted to comb their hair or take a shower.
But I wasn't diagnosed--not when I was a toddler, and not in the sixth grade. In fact, I wasn't diagnosed until I was twenty. I had tried to leave the house and go to college, but my self-care and other skills still weren't up to snuff. I became very stressed out and depressed, and things started to fall apart. My self-injury (a life-long habit) increased in frequency to the point that I was eventually hospitalized. I was diagnosed with borderline personality, PTSD, depression, and OCD and discharged with instructions to come in to the health care clinic for counseling and medication.
Like most college students I had taken a psychology class, and there I learned what Asperger syndrome was. I was intrigued because it seemed to me like I had a lot of these traits. Was it possible, I wondered, for a person to have a lot of Asperger's traits even when they hadn't been diagnosed? I mentioned it to my mom on one of my phone calls to her, and she replied, "Oh, they would have diagnosed you with that. But I didn't want you labeled." I had been taken out of school after the sixth grade and home-schooled, or sent to a small private school where most children had some sort of oddity.
That made me think; so on one of my visits to the clinic, after I had my monthly prescriptions I mentioned my mom's statement. Why did I have so many autistic traits, I wondered? And it turned out I had gotten very, very lucky: The nurse-practitioner who did medication appointments for me has a grown-up son with Asperger's, and she knew what to look for. She immediately hit me with lots of questions, which I answered as well as I could. We could both see the light bulb switching on above our heads. Autism, unlike borderline personality or OCD, actually fit--and fit well. (I was misdiagnosed with OCD and borderline; I had never had either one to begin with. PTSD and depression were correct, but both are now in remission.)
My first diagnosis was Asperger syndrome. I was moved around the spectrum randomly as each new psychologist had a different opinion; technically, my diagnosis should be PDD-NOS (atypical autism), but it doesn't matter to me which my label actually is, so long as it gets me the help I need to get through life and follow my dreams. Eventually I went through thorough neuropsych testing and received a report that showed me strengths, weaknesses, and evidence of both autism and ADHD. Neither one surprised me because by that point everyone was talking about one or the other.
My reaction to being diagnosed was, honestly, more of an "Oh, so that's what it is." I didn't feel panicky or disappointed; it was more like I'd just got the answer to a difficult math problem. I had already been labeled several times, and I was getting used to it. I had had my first depressive episode around age nine and been taken to counseling for it (the counselor was useless, but that's another story). I knew what depression was and the episode I had at twenty was my third, not my first. I disagreed with the borderline diagnosis and was glad to be rid of it. (I had been diagnosed with BPD solely because of my tendency toward self-injury, and had no other Borderline traits.) I had studied psychology quite a bit by that point and knew that neither mental illness nor developmental disability was anything to be ashamed of. So, when I was diagnosed with autism, my response was to do what I do when anything new comes into my life: Learn about it. I started with the local library and ended up trawling through the medical journals. And I learned a lot that even now helps me cope--live on my own, go to school. Some day I'll have a job.
Sometimes I'm annoyed with my mom for not telling me. I think, if I had been diagnosed as a child, I would have been able to access some of the services that would've helped me learn things earlier rather than muddle through teaching them to myself. I might have been taught how to clean a room, or keep myself clean; I might have learned how to match my clothing or have a conversation, or how close it's all right to get to somebody. I might have learned enough about how to keep my stress level down and my sensory system under control that I might not have ended up with depression and been hospitalized. I would have wanted to know, I think. But I can't get too angry at my mom. She thought that, by not telling me, by not having me "labeled", she was doing me a favor. She was mistaken, but it really wasn't her fault. My mom, and many other people in our society, truly think it's a horrible thing to be disabled and believe, for some reason, that it'll hurt a child to be told. The odd thing is, I ended up getting labeled anyway. I was labeled "stubborn" and "spoiled" and "dramatic" and "lazy" and "rebellious". I think I would have preferred "autistic", especially since those labels made me feel like it was all my fault.
You know how, a long time ago, people never told their kids that they were adopted; and then their kids found out as teens or adults and felt really betrayed? I think it's a lot of the same principle. People thought being adopted was a shameful thing, so they didn't tell their kids; but their attempt to "protect" them ended up hurting them instead. People think disability is a shameful thing, too, and they don't tell their autistic kids about their diagnosis.
But it's not, is it? I mean, your boy is just as good a kid as any other. You wouldn't trade him for the world. You love him, not his theoretical neurotypical counterpart. That's the important point to make.
It's easiest on adopted kids to grow up knowing. Similarly, it's easy for autistic kids to grow up knowing their diagnosis. Kids who know from early on just have it as a normal part of their lives--which it is, of course. Autism is part of MY normal life, even if it isn't part of most people's. I think the easiest way is just to talk about it, casually, like you would about anything else. Mention it as a neutral part of who he is. Explain that his autism is why he has a harder time learning some things and goes to get extra lessons. You might need to explain that it's not a disease; that his brain just grew differently. Make sure he knows you love him and you love everything about him, including his differences. He needs to know this stuff. Maybe at first it'll be something that isn't particularly interesting to him; he'll want to run off and play because it's not really relevant right now. But just expose him to the idea, so he knows about it.
Like I said, though, your words aren't the important thing. Your actions are. I'm not a mom, so I don't know near as much about that as you do. Being his mom, being the person he can trust, is much more important than wording things just the right way.
Q&As update Mondays and Fridays. Use the Q&A Submissions entry to submit your questions.