The first-ever person with autism I even met was a 10 year-old-girl girl with severe, non-verbal, low-functioning autism. The terms are used purposely, because that's how the girl was described to me at the time! Me and another volunteer were supposed to meet K and her mother at a coffee house next to a playground. When we got there, K was sitting on a swing, constantly moving her head from right to left and back and her mother was standing next to her. Thankfully the other volunteer was more socially capable than me so during the meetings she would keep the mother company and I would play with K. It got to the point that I didn't even talk to the mom (other than a quick "hello") when we first met, I just rushed to K and started playing with her. I was told that K didn't engage, didn't enjoy other people, wouldn't play. Yet she could probably let me tickle her for hours!!! And every time I stopped she would take my hands and put them to her belly so I could go again. She would run to a swing and I would swing her for as long as my hands got tired! We would walk hand in hand by the seaside and I would talk, even though I was told that she can't process speech and I had no confirmation that she listened (or that she didn't think "Oh god, just shut up!!! :P ) Soon nothing K did looked strange to me and I was very frustrated by the fact that everything she did had a "scientific" name. Tickling and swinging didn't count as games, because they were "sensory" pleasing. Yet, again to me, every child loved swinging and tickling! But no, she couldn't share attention, follow rules or play pretend, so she couldn't play. I wouldn't get these things. Surely games are whatever makes you have fun! Why should certain things make you have fun? Fun is fun, no matter how you have it! That was what I now like to call my pre-developmental psychology thinking!
That summer I went to a "special needs camp" for the first time. Special needs camps were places were people with special needs could go for 15 days during the summer to have a bit of a vacation by the sea and give their family a chance to relax from their presence. Again, their words, not mine. Looking back to it the public one I went for the first two years was stone cold abuse of the fact that people with SEN couldn't speak for themselves. They just locked us away, literally, in a place with tents and a gate to a beach that had a ramp and served us funny tasting food three times a day. Literally. Nothing else happened. It was the summer version of institutionalisation basically! Anyway, I was assigned to four people I had to dress, feed, wash and generally take care of for 15 days. Three of them were adults and one of them was a 10-year-old crazily hyperactice child on the autism spectrum. That kid became a love and an obsession for the next three years of my life.
The general experience was a total nightmare so I won't get too much into it. I have no idea under what logic on earth they expected an 18-year-old they had interviewed for three minutes to take complete care of four freaking people. The funniest bit of all was that one of my adults had CP so he had to be assisted to walk and the 10-year-old was hyperactive. So basically I had to wait for the one whilst chasing the other all day long, whilst having one of the others behind me all the time asking me questions I didn't have the heart to ignore and remebering to check on the forth. I couldn't multitask much.... I still can't. To this day, I have no idea how I did it. I still consider it one of life's miracles. Even if at the end the parents ended up hating me for losing too many pairs of socks and returning too many clothes "ruined" (with bleach on them) from the constantly cleaned toilet floor.
But that horrible experience changed my life. I returned from there OBSESSED with little G, repeating his little funny echolalic phrases to EVERYBODY and constantly talking to everybody about how he did this and that. The little brat didn't let me sleep for 15 days. We were sleeping holding hands so that I would now if he ever tried to get up because he could get out of the tent and out of the camping in seconds. He would let go of my hand because he turned side in his sleep and I would gasp in my sleep, popping out of the bed drenched in cold sweat in the fear he would run away. I stepped on an archin one time because I had to run back into the sea and be next to him while he was trying to reach the buoys that marked how far we could go (he was obsessed with them). I swear I broke the swimming world record that day... :P For the entire summer after camp I would wake my flatmate in the middle of the night because I would shout his name in my sleep in panic that he went away. But I fell in love with that kid. I deeply and honestly did. I owe him so much, because he reminded me how it feels to be obsessed with something again: he woke the special interest monster!
7 years later and I still can't stop talking about that kid! I met a ton of children with autism since each of which holds a VERY special place in my heart, but I guess that first, raw experience that I had before all the knowledge and all the reading is bound to be even more special. But there's one more thing that happened with him that I will probably never forget. Little G used only repetitive, echolalic speech. At least that what everybody thought/knew. He would say "You want the bottle" instead of "I want the bottle" and all those little things that children with autism do and we all know (and love? I know I do!). During camp days, he developped a fascination on a 29-year-old man's with Down syndrome feet. He would go touch them and he would shout at him endlessly and G would laugh. One other carer from there then told me that if he continues to upset the other man (who was also under my care), he would have a hear attack because "Down's have a sensitive heart and he's close to his age-limit - Down's don't live more than 30". In my literal and panicky head that instantly got translated to me conspiring to murder. I mean he would die and my lack of ability to control the kid I was RESPONSIBLE for would be to blame.
What followed wasn't one of my proudest moments as a teacher for children with autism, but it changed my perception about autism forever. From that moment on nobody could convince me that children with autism didn't have empathy, didn't understand emotions or couldn't articulate what they felt. One evening he did it again: and the man started crying. Now in order to understand the next bit you have to keep in mind that I was acting instictively and whatever happened was before I knew anything about autism other than my own experience. I ran over there, in panic, asked one of the other carers to calm the other man down and grabed little G by the hand. I dragged him to a closeby bench while the poor thing was still in half shock-half guilt for what happened. I told him that we were going to sit there until he understands perfectly that he CAN'T do that again no matter how much he wants to and until he promises me that he won't. He told me that he has to go pee (he asked for the bathroom every ten minutes, mostly to get a chance to walk around but thinking back to it it was entirely possible that he couldn't control his bladder too) but I told him that we won't leave the bench until he promises and I don't care what he says. He did, immediately. He said "I promise". And we went to the bathroom.
After he got out of the bathroom, I was still pretty pissed at him but mostly I was stresssed. I probably was at my limit in general.... He came towards me with his trousers still down because I always helped him pull them up. I reached to get them this time too, but before I got the chance he ran at me first. He hugged me so hard, my ribs started to hurt. He started crying, loudly and repeatedly. He cried for a few minutes as he still grabbed me and I didn't know what to do. But then he gave me the final blow: "You don't love me!" he said. No echolalia. "You" meant me and "me" meant him. My heart broke into a thousand pieces when I heard that and tears came to my eyes too. I came down to his level (he let me go after that), looked him in the eyes (we made perfect eye contact) and I told him "OF COURSE I love you! I do! I love you! And it's because I love and I know what a good heart you have and I want everybody else to see it too that I told you all these things!!!!" It was the truth. 100% of it. That moment I realised that his trousers were still down... I pulled them up. He hugged me again. I hugged him back. We never had to argue about anything again...
When I told people what happened they didn't believe me much, apart from a friend of mine. They thought I overglorified the story. Next term we had our "Introduction to autism" course at the university and I told the lecturer (who knew that boy) what happened as soon as I saw her, I was dying to know what it meant. She told me that in rare occasions people with autism can step outside of their "autism" and be like normal people for a while, sharing emotions and such. To this day, it's probably the most bizarre explanation I've heard. I knew it didn't make sense as soon as I heard it. I still don't know what made little G react like that.... I went to his school a couple of months later, expecting that he wouldn't remember me at all for some reason. He took a quick look at me, locked himself in the gym and started running around whilst laughing loudly. I didn't need any more validation. He did remeber me...
This is what autism is for me. I had tons of these moments with a lot of different children after that, I still do. People told me that teaching children with autism has an expiration date, it's so hard that you can't do it for the rest of your life... I could NEVER see myself doing something else. Everytime I get tired (and it's usually by not related to children stuff) memories like this make me remember why I am doing this. And I remember what my life purpose is. And it puts a smile on my face...
That summer I went to a "special needs camp" for the first time. Special needs camps were places were people with special needs could go for 15 days during the summer to have a bit of a vacation by the sea and give their family a chance to relax from their presence. Again, their words, not mine. Looking back to it the public one I went for the first two years was stone cold abuse of the fact that people with SEN couldn't speak for themselves. They just locked us away, literally, in a place with tents and a gate to a beach that had a ramp and served us funny tasting food three times a day. Literally. Nothing else happened. It was the summer version of institutionalisation basically! Anyway, I was assigned to four people I had to dress, feed, wash and generally take care of for 15 days. Three of them were adults and one of them was a 10-year-old crazily hyperactice child on the autism spectrum. That kid became a love and an obsession for the next three years of my life.
The general experience was a total nightmare so I won't get too much into it. I have no idea under what logic on earth they expected an 18-year-old they had interviewed for three minutes to take complete care of four freaking people. The funniest bit of all was that one of my adults had CP so he had to be assisted to walk and the 10-year-old was hyperactive. So basically I had to wait for the one whilst chasing the other all day long, whilst having one of the others behind me all the time asking me questions I didn't have the heart to ignore and remebering to check on the forth. I couldn't multitask much.... I still can't. To this day, I have no idea how I did it. I still consider it one of life's miracles. Even if at the end the parents ended up hating me for losing too many pairs of socks and returning too many clothes "ruined" (with bleach on them) from the constantly cleaned toilet floor.
But that horrible experience changed my life. I returned from there OBSESSED with little G, repeating his little funny echolalic phrases to EVERYBODY and constantly talking to everybody about how he did this and that. The little brat didn't let me sleep for 15 days. We were sleeping holding hands so that I would now if he ever tried to get up because he could get out of the tent and out of the camping in seconds. He would let go of my hand because he turned side in his sleep and I would gasp in my sleep, popping out of the bed drenched in cold sweat in the fear he would run away. I stepped on an archin one time because I had to run back into the sea and be next to him while he was trying to reach the buoys that marked how far we could go (he was obsessed with them). I swear I broke the swimming world record that day... :P For the entire summer after camp I would wake my flatmate in the middle of the night because I would shout his name in my sleep in panic that he went away. But I fell in love with that kid. I deeply and honestly did. I owe him so much, because he reminded me how it feels to be obsessed with something again: he woke the special interest monster!
7 years later and I still can't stop talking about that kid! I met a ton of children with autism since each of which holds a VERY special place in my heart, but I guess that first, raw experience that I had before all the knowledge and all the reading is bound to be even more special. But there's one more thing that happened with him that I will probably never forget. Little G used only repetitive, echolalic speech. At least that what everybody thought/knew. He would say "You want the bottle" instead of "I want the bottle" and all those little things that children with autism do and we all know (and love? I know I do!). During camp days, he developped a fascination on a 29-year-old man's with Down syndrome feet. He would go touch them and he would shout at him endlessly and G would laugh. One other carer from there then told me that if he continues to upset the other man (who was also under my care), he would have a hear attack because "Down's have a sensitive heart and he's close to his age-limit - Down's don't live more than 30". In my literal and panicky head that instantly got translated to me conspiring to murder. I mean he would die and my lack of ability to control the kid I was RESPONSIBLE for would be to blame.
What followed wasn't one of my proudest moments as a teacher for children with autism, but it changed my perception about autism forever. From that moment on nobody could convince me that children with autism didn't have empathy, didn't understand emotions or couldn't articulate what they felt. One evening he did it again: and the man started crying. Now in order to understand the next bit you have to keep in mind that I was acting instictively and whatever happened was before I knew anything about autism other than my own experience. I ran over there, in panic, asked one of the other carers to calm the other man down and grabed little G by the hand. I dragged him to a closeby bench while the poor thing was still in half shock-half guilt for what happened. I told him that we were going to sit there until he understands perfectly that he CAN'T do that again no matter how much he wants to and until he promises me that he won't. He told me that he has to go pee (he asked for the bathroom every ten minutes, mostly to get a chance to walk around but thinking back to it it was entirely possible that he couldn't control his bladder too) but I told him that we won't leave the bench until he promises and I don't care what he says. He did, immediately. He said "I promise". And we went to the bathroom.
After he got out of the bathroom, I was still pretty pissed at him but mostly I was stresssed. I probably was at my limit in general.... He came towards me with his trousers still down because I always helped him pull them up. I reached to get them this time too, but before I got the chance he ran at me first. He hugged me so hard, my ribs started to hurt. He started crying, loudly and repeatedly. He cried for a few minutes as he still grabbed me and I didn't know what to do. But then he gave me the final blow: "You don't love me!" he said. No echolalia. "You" meant me and "me" meant him. My heart broke into a thousand pieces when I heard that and tears came to my eyes too. I came down to his level (he let me go after that), looked him in the eyes (we made perfect eye contact) and I told him "OF COURSE I love you! I do! I love you! And it's because I love and I know what a good heart you have and I want everybody else to see it too that I told you all these things!!!!" It was the truth. 100% of it. That moment I realised that his trousers were still down... I pulled them up. He hugged me again. I hugged him back. We never had to argue about anything again...
When I told people what happened they didn't believe me much, apart from a friend of mine. They thought I overglorified the story. Next term we had our "Introduction to autism" course at the university and I told the lecturer (who knew that boy) what happened as soon as I saw her, I was dying to know what it meant. She told me that in rare occasions people with autism can step outside of their "autism" and be like normal people for a while, sharing emotions and such. To this day, it's probably the most bizarre explanation I've heard. I knew it didn't make sense as soon as I heard it. I still don't know what made little G react like that.... I went to his school a couple of months later, expecting that he wouldn't remember me at all for some reason. He took a quick look at me, locked himself in the gym and started running around whilst laughing loudly. I didn't need any more validation. He did remeber me...
This is what autism is for me. I had tons of these moments with a lot of different children after that, I still do. People told me that teaching children with autism has an expiration date, it's so hard that you can't do it for the rest of your life... I could NEVER see myself doing something else. Everytime I get tired (and it's usually by not related to children stuff) memories like this make me remember why I am doing this. And I remember what my life purpose is. And it puts a smile on my face...
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