When I get brave enough to mention, as needed, that Anna has ASD, I often get strange looks. People look at Anna, then look at me like I have two heads, and say something like "well, it must be MILD". Those comments are probably meant to be nice but they incredibly dismissive. I wish I could give people my eyes and my ears and my heart for awhile, so they could see what "mild" ASD looks like.
"Mild" ASD at 3 years old was Anna screeching at other children because she did not know how to talk to them. It was Anna not able to sit still for more than a minute at a time. It was Anna jumping, stomping and throwing herself against floors and walls day in and day out. It was Anna biting herself out of frustration over not being able to communicate. It was Anna shrieking and sobbing and running away when children approached her to play. It was Anna looking at us blankly and repeating the last few words of our sentences, or it was Anna scripting lines from videos when someone tried to talk to her. It was Anna running in circles or spinning herself in place. It was Anna hoarding books of similar size and shape, lining them up in a row on the floor without reading them, and then freaking out when someone disturbed them. After a year and a half of speech therapy, occupational therapy and social skills training, and 6 months of the GFCF diet, I'll give you a glimpse of what "mild" ASD looks like for Anna at 5 years old.
While on vacation, the girls and I spent 5 days with my best friend and her two children, ages 5 and 2 1/2. Anna and E are the same age, born just three months apart. The first day we were there, Anna and E were jazzed about being together. Anna is more passive and was happy to let E take the lead in what to do and where to go. So they got along well and I have some very sweet pictures of them sitting side by side on the couch reading together.
The second day we were there, E was the flower girl in a wedding. She came home and gave Anna a spare flower girl dress. They pranced around together and we snapped pictures of them. E was smiling big for the camera and hugging Anna close. Anna was closing her eyes and looking away while holding herself stiffly and pulling away from E slightly, uncomfortable with the hugs.
After that, their interactions got more interesting. I could see that E got more and more frustrated and testy with Anna. Anna would not jump into the pool and get her head wet. Anna did not want to ride a big girl bike. Anna could not haul herself up on the trapeze swing or pump her legs to swing herself on the swingset. Anna was quiet and didn't respond to many of E's requests. When she did talk, her sentence structure was awkward - she spoke differently and sounded younger. I heard E trying to sort out what the problem was.
"Mommy, why won't Anna look at me when I talk to her?"
"Why won't Anna talk to me when I talk to her?"
"Why won't Anna play with me when I ask her to?"
"Anna, why don't you get that? It's so obvious!"
"Anna, what is your problem?!"
I intervened at that last comment. But I cannot blame E for her frustration. I get frustrated too, and I'm Anna's mom. I tried breaking ASD down in terms E could understand and told her that Anna has a hard time with loud noises and a hard time talking with other children. E nodded and accepted this, but I could see that it was still difficult for her to interact with Anna. And Anna is high functioning. And E is only 5 years old.
I was telling my sister-in-law about these interactions. She asked me if watching them made me sad. I said no, because it has not hit Anna yet. E's frustration went mostly over Anna's head. But Anna will become aware, and it will hit her, and when it does it will be hard for me to watch. Until then, there is too much work to be done to waste energy feeling sad. Anna is high functioning, but not enough so to fly under the radar. I will not let anyone's dissuading opinion lull me into inertia. You may look at Anna and think that because she's not having difficulty at that moment you can see, that her ASD is "mild". But I think that when 5 year old peers pick up on Anna's difficulties and start dissecting them, that is not mild. The future effects of ridicule and social ostracization will not be mild. If Anna's difficulties are not addressed now, the consequences down the road - low self-esteem, low self-confidence, self-doubt, depression, anxiety - will not be mild. Would I not be irresponsible to discontinue finding ways to help her? As her mom, how can I just throw her into the wind and hope it all works out, when I know there are steps to take to help her achieve her fullest potential?
I leave you with two thoughts from Temple Grandin. I hope they are illuminating for you. For me they are a good solid kick in the pants.
"At puberty, fear became my main emotion. When the hormones hit, my life revolved around trying to avoid a fear-inducing panic attack. Teasing from other kids was very painful, and I responded with anger. I eventually learned to control my temper, but the teasing persisted, and I would sometimes cry. Just the threat of teasing made me fearful; I was afraid to walk across the parking lot because I was afraid somebody would call me a name." Temple Grandin, Thinking in Pictures page 90
"Hans Asperger stated that normal children acquire social skills without being consciously aware because they learn by instinct. In people with autism, 'Social adaptation has to proceed via intellect'. Jim...an autistic graduate student...made a similar observation. He stated that people with autism lack the basic instincts that make communication a natural process. Autistic children have to learn social skills systematically, the same way they learn their school lessons." Temple Grandin, Thinking in Pictures page 155
"Mild" ASD at 3 years old was Anna screeching at other children because she did not know how to talk to them. It was Anna not able to sit still for more than a minute at a time. It was Anna jumping, stomping and throwing herself against floors and walls day in and day out. It was Anna biting herself out of frustration over not being able to communicate. It was Anna shrieking and sobbing and running away when children approached her to play. It was Anna looking at us blankly and repeating the last few words of our sentences, or it was Anna scripting lines from videos when someone tried to talk to her. It was Anna running in circles or spinning herself in place. It was Anna hoarding books of similar size and shape, lining them up in a row on the floor without reading them, and then freaking out when someone disturbed them. After a year and a half of speech therapy, occupational therapy and social skills training, and 6 months of the GFCF diet, I'll give you a glimpse of what "mild" ASD looks like for Anna at 5 years old.
While on vacation, the girls and I spent 5 days with my best friend and her two children, ages 5 and 2 1/2. Anna and E are the same age, born just three months apart. The first day we were there, Anna and E were jazzed about being together. Anna is more passive and was happy to let E take the lead in what to do and where to go. So they got along well and I have some very sweet pictures of them sitting side by side on the couch reading together.
The second day we were there, E was the flower girl in a wedding. She came home and gave Anna a spare flower girl dress. They pranced around together and we snapped pictures of them. E was smiling big for the camera and hugging Anna close. Anna was closing her eyes and looking away while holding herself stiffly and pulling away from E slightly, uncomfortable with the hugs.
After that, their interactions got more interesting. I could see that E got more and more frustrated and testy with Anna. Anna would not jump into the pool and get her head wet. Anna did not want to ride a big girl bike. Anna could not haul herself up on the trapeze swing or pump her legs to swing herself on the swingset. Anna was quiet and didn't respond to many of E's requests. When she did talk, her sentence structure was awkward - she spoke differently and sounded younger. I heard E trying to sort out what the problem was.
"Mommy, why won't Anna look at me when I talk to her?"
"Why won't Anna talk to me when I talk to her?"
"Why won't Anna play with me when I ask her to?"
"Anna, why don't you get that? It's so obvious!"
"Anna, what is your problem?!"
I intervened at that last comment. But I cannot blame E for her frustration. I get frustrated too, and I'm Anna's mom. I tried breaking ASD down in terms E could understand and told her that Anna has a hard time with loud noises and a hard time talking with other children. E nodded and accepted this, but I could see that it was still difficult for her to interact with Anna. And Anna is high functioning. And E is only 5 years old.
I was telling my sister-in-law about these interactions. She asked me if watching them made me sad. I said no, because it has not hit Anna yet. E's frustration went mostly over Anna's head. But Anna will become aware, and it will hit her, and when it does it will be hard for me to watch. Until then, there is too much work to be done to waste energy feeling sad. Anna is high functioning, but not enough so to fly under the radar. I will not let anyone's dissuading opinion lull me into inertia. You may look at Anna and think that because she's not having difficulty at that moment you can see, that her ASD is "mild". But I think that when 5 year old peers pick up on Anna's difficulties and start dissecting them, that is not mild. The future effects of ridicule and social ostracization will not be mild. If Anna's difficulties are not addressed now, the consequences down the road - low self-esteem, low self-confidence, self-doubt, depression, anxiety - will not be mild. Would I not be irresponsible to discontinue finding ways to help her? As her mom, how can I just throw her into the wind and hope it all works out, when I know there are steps to take to help her achieve her fullest potential?
I leave you with two thoughts from Temple Grandin. I hope they are illuminating for you. For me they are a good solid kick in the pants.
"At puberty, fear became my main emotion. When the hormones hit, my life revolved around trying to avoid a fear-inducing panic attack. Teasing from other kids was very painful, and I responded with anger. I eventually learned to control my temper, but the teasing persisted, and I would sometimes cry. Just the threat of teasing made me fearful; I was afraid to walk across the parking lot because I was afraid somebody would call me a name." Temple Grandin, Thinking in Pictures page 90
"Hans Asperger stated that normal children acquire social skills without being consciously aware because they learn by instinct. In people with autism, 'Social adaptation has to proceed via intellect'. Jim...an autistic graduate student...made a similar observation. He stated that people with autism lack the basic instincts that make communication a natural process. Autistic children have to learn social skills systematically, the same way they learn their school lessons." Temple Grandin, Thinking in Pictures page 155
3 comments:
Hi, Erin -
I am probably going to have my inlaws read this post, in addition to some other material. My son is not yet back on track from the regression he undewent in August when we visited them, and I just learned they are headed here in November. It's time to lay down the law, and it's not going to be pretty.
Want to meet Friday morning?
Christine
We should set up a HFA party when your inlaws are here. I've missed Friday mornings! I might be able to make it this Friday for a half an hour. Are you available tomorrow morning?
Tomorrow is crazy - I have to pack in his school work before he goes to guitar. I have 2 more banjo lessons before I quit until next summer. It's just too busy with all the school activities. Although, I've begun blaming my lack of involvement with each school on the other schools - I've got people apologizing for asking me to do anything. Brilliant!
Love the HFA party idea, but then they'd say "well he's not like THOSE kids!"
Post a Comment