Friday, May 18, 2007
The Wash Up
Well, it's has been a different sort of week for this blog, but when I first saw that autism awareness week was coming up, I did want to say a few things about it to help those who want to know more about what is after all a very common condition and to show it's very okay to talk about autism openly, so that for you gentle reader, the more you know about it, the better it is not just for you, but for my daughter M as well.
I know that yesterday's post may have been a hard slog to get through and there is something more I want to say about it for those of you that troubled yourselves to read mom-mos and Jim Sinclair's posts and that is none of us are right or wrong about what we said, we simply hold alternate views. I completely understand what it is they're saying, for me, what I saw in their posts was acceptance of autism; accepting it as a valid part of you or someone you know is one of the most powerful and motivating things you can do when you are dealing with it, it enables you to move forward in your life.
A lot of people get stuck for a time in thinking about how unfair, cruel and capricious nature is in giving their child or children autism, some people with autism can also think the same way. Unfortunately, it's a very destructive way to think and it's also wrong. Nature is none of those things and doesn't care at all what we think, nature is about continuation of life itself and will do it any way it can, our concepts of fairness have nothing to do with it. Autism is like a lump of clay that you can shape any way you want. No one fully understands autism and the part it plays, but it most definitely has a part to play in our lives, that apart from notable exceptions such as Bill Gates and Temple Grandin, we largely don't hear about. Autism's footsteps are all around, helping shape our lives.
Autism also enables us to examine ourselves. I've lost count of the number of parents of children with autism that say at some point they can identify an autistic feature within themselves. When children are assessed for autism, some of them do what is known as a CARS test, which basically scores them on a range of behaviours and abilities, the score for autism is somewhere above thirty points. But what if you score just below this? It means you have a lot of autistic features, yet you are not autistic, but the thing is it's perfectly possible to say you are on the spectrum. If it is that some of us possess these features yet are not autistic, is that not a window into how the mind works? That autism is in fact a normal, though not well understood, part of the human condition.
We shouldn't be alarmed that autism seems more prevalent these days, with a given rate of about one in 160. Some researchers think the rate may well have been constant for a long period of time, it's just that we are better at diagnosing it these days, so more cases are coming to light. So what is autism exactly? Who knows, I'll leave that to the scientists and researchers to figure out. I'll just play with my daughter, read to her, talk to her, be with her, love her. That's all I need to know.
I would like to say a big thank you to all those readers who have stuck with me this week and special thanks to mom-nos, kitchen wench, limes & lycopene and I think I have a recipe for that for all recently pointing readers to me, thanks guys, it meant a lot. And very special thanks to Tanna, whose constant support is such an inspiration.
For those of you who have come here through autism links, just to let you know I only do occasional autism specific posts, though I do talk about my daughter M quite a lot, she is an extra thread I weave into my writing.
Right, now I'm off to bake a cake!
I know that yesterday's post may have been a hard slog to get through and there is something more I want to say about it for those of you that troubled yourselves to read mom-mos and Jim Sinclair's posts and that is none of us are right or wrong about what we said, we simply hold alternate views. I completely understand what it is they're saying, for me, what I saw in their posts was acceptance of autism; accepting it as a valid part of you or someone you know is one of the most powerful and motivating things you can do when you are dealing with it, it enables you to move forward in your life.
A lot of people get stuck for a time in thinking about how unfair, cruel and capricious nature is in giving their child or children autism, some people with autism can also think the same way. Unfortunately, it's a very destructive way to think and it's also wrong. Nature is none of those things and doesn't care at all what we think, nature is about continuation of life itself and will do it any way it can, our concepts of fairness have nothing to do with it. Autism is like a lump of clay that you can shape any way you want. No one fully understands autism and the part it plays, but it most definitely has a part to play in our lives, that apart from notable exceptions such as Bill Gates and Temple Grandin, we largely don't hear about. Autism's footsteps are all around, helping shape our lives.
Autism also enables us to examine ourselves. I've lost count of the number of parents of children with autism that say at some point they can identify an autistic feature within themselves. When children are assessed for autism, some of them do what is known as a CARS test, which basically scores them on a range of behaviours and abilities, the score for autism is somewhere above thirty points. But what if you score just below this? It means you have a lot of autistic features, yet you are not autistic, but the thing is it's perfectly possible to say you are on the spectrum. If it is that some of us possess these features yet are not autistic, is that not a window into how the mind works? That autism is in fact a normal, though not well understood, part of the human condition.
We shouldn't be alarmed that autism seems more prevalent these days, with a given rate of about one in 160. Some researchers think the rate may well have been constant for a long period of time, it's just that we are better at diagnosing it these days, so more cases are coming to light. So what is autism exactly? Who knows, I'll leave that to the scientists and researchers to figure out. I'll just play with my daughter, read to her, talk to her, be with her, love her. That's all I need to know.
I would like to say a big thank you to all those readers who have stuck with me this week and special thanks to mom-nos, kitchen wench, limes & lycopene and I think I have a recipe for that for all recently pointing readers to me, thanks guys, it meant a lot. And very special thanks to Tanna, whose constant support is such an inspiration.
For those of you who have come here through autism links, just to let you know I only do occasional autism specific posts, though I do talk about my daughter M quite a lot, she is an extra thread I weave into my writing.
Right, now I'm off to bake a cake!
Labels: understanding autism
Thursday, May 17, 2007
A Way To Say It
One of the things I'm still learning about is the language of autism and how it's used. One of the earliest examples occured when I was corresponding with a fellow blogger, mom-nos about the way she was describing her son. She always wrote when mentioning autism that her son is autistic, but what I prefer to say and write about my daughter M is that she has autism. It's a very fine distinction that makes a big difference about the way we think of autism and the people who have it. Mom-nos pointed me at one of her posts which explained why she wrote and thought that way and also pointed me to a post written by an autistic person, Jim Sinclair, who mirrored her thoughts.
In a nutshell, it's about how autistic people view themselves, some take the position that autism is so intrinsic to them, so much a part of themselves, that it makes them the way they are, the way we view them and as such are more comfortable being called autistic as this defines their character, which can't be separated from them. What Jim would like me to say is "Jim is autistic" and I respect that and would happily do so, but what I'm really longing to say is "Jim is a person" and by calling him autistic, it's distracting me from the main game - his personality, who he really is, of which autism is just a part.
With autism there are several defining traits that need to be present in order to arrive at a diagnosis, some of them are easy to spot, speech delay, lack of eye contact or the inability to socialize with others. But some behaviours that are identified as autistic are also common to all people. Have you ever seen someone nervously rocking their leg up and down or another who likes to have their possessions lined up and ordered just so? What about someone who becomes obsessive about a hobby or interest and how do you feel when someone sits in your favourite chair, slightly uncomfortable?
There might be little bit of autism in all of us, which should come as no surprise, autism is the result of the brain being wired up a certain way and causes some behaviours and thought processes to be modified or amplified, the acme of which can be seen in autistic savants, people who have an extraordinary gift or abilities, the most famous of which would be Kim Peek, who was the inspiration for the movie Rain Man, with his eidetic (photographic) memory. But all us can recall detail to a lesser or greater extent and there is some evidence to suggest that you can train yourself to have total recall, so the latent ability may well reside in all of us, it's just that Kim's brain was pre-wired for total recall, he didn't have to work at it. But if you were to work at it, you could in theory get a part of your brain to wire itself up just like Kim's.
So if it's the brains internal wiring that is responsible for autism, yet it might be that all of us possess some of its traits, how is it possible for autism to define who you are? All of us a wired differently, no one is the same as the other; all people with an autism diagnosis are considered somewhere on a spectrum - precisely because they are not the same as each other, which is exactly like every other person on this planet, so when you tell me you are autistic, you are telling me nothing about yourself, other than you may have some qualities that are unique to you, just as I have qualities that are unique to me, some of which we might share. It's as if autism is hiding you in its shadow. But when you tell me you have autism I immediately see you as a person who has disclosed a part of who you are with me, you are saying to me that you have autism, it doesn't have you. That's what I want, to see you as a person.
Thinking like this was central to how I viewed my own daughter after we had received her diagnosis. It didn't change a single thing that I thought or felt about her though it certainly helped to explain a few things, but M was exactly the same person after the diagnosis as she was before it, nothing changed to make her different and I treated her no differently because of it. Sure, we had to learn a new way to approach certain things, for instance we used picture scripts of what we wanted her to do and she used those same scripts to tell us what she wanted, the pictures being easier for her to understand than language, but her essence, her character, her being, nothing changed.
When I look at M, I don't see autism, I see my daughter.
In a nutshell, it's about how autistic people view themselves, some take the position that autism is so intrinsic to them, so much a part of themselves, that it makes them the way they are, the way we view them and as such are more comfortable being called autistic as this defines their character, which can't be separated from them. What Jim would like me to say is "Jim is autistic" and I respect that and would happily do so, but what I'm really longing to say is "Jim is a person" and by calling him autistic, it's distracting me from the main game - his personality, who he really is, of which autism is just a part.
With autism there are several defining traits that need to be present in order to arrive at a diagnosis, some of them are easy to spot, speech delay, lack of eye contact or the inability to socialize with others. But some behaviours that are identified as autistic are also common to all people. Have you ever seen someone nervously rocking their leg up and down or another who likes to have their possessions lined up and ordered just so? What about someone who becomes obsessive about a hobby or interest and how do you feel when someone sits in your favourite chair, slightly uncomfortable?
There might be little bit of autism in all of us, which should come as no surprise, autism is the result of the brain being wired up a certain way and causes some behaviours and thought processes to be modified or amplified, the acme of which can be seen in autistic savants, people who have an extraordinary gift or abilities, the most famous of which would be Kim Peek, who was the inspiration for the movie Rain Man, with his eidetic (photographic) memory. But all us can recall detail to a lesser or greater extent and there is some evidence to suggest that you can train yourself to have total recall, so the latent ability may well reside in all of us, it's just that Kim's brain was pre-wired for total recall, he didn't have to work at it. But if you were to work at it, you could in theory get a part of your brain to wire itself up just like Kim's.
So if it's the brains internal wiring that is responsible for autism, yet it might be that all of us possess some of its traits, how is it possible for autism to define who you are? All of us a wired differently, no one is the same as the other; all people with an autism diagnosis are considered somewhere on a spectrum - precisely because they are not the same as each other, which is exactly like every other person on this planet, so when you tell me you are autistic, you are telling me nothing about yourself, other than you may have some qualities that are unique to you, just as I have qualities that are unique to me, some of which we might share. It's as if autism is hiding you in its shadow. But when you tell me you have autism I immediately see you as a person who has disclosed a part of who you are with me, you are saying to me that you have autism, it doesn't have you. That's what I want, to see you as a person.
Thinking like this was central to how I viewed my own daughter after we had received her diagnosis. It didn't change a single thing that I thought or felt about her though it certainly helped to explain a few things, but M was exactly the same person after the diagnosis as she was before it, nothing changed to make her different and I treated her no differently because of it. Sure, we had to learn a new way to approach certain things, for instance we used picture scripts of what we wanted her to do and she used those same scripts to tell us what she wanted, the pictures being easier for her to understand than language, but her essence, her character, her being, nothing changed.
When I look at M, I don't see autism, I see my daughter.
Labels: understanding autism
Wednesday, May 16, 2007
The Autism Shield
One of the quandaries faced by parents with autistic children is how much to say about the condition to family, friends and strangers. When you first receive the diagnosis, in all likelihood, you will know very little about the condition and exactly where on the autistic spectrum your child sits. You will have a CARS score or some such thing, but that's more an indication of severity, rather than an accurate guide as to what your child's abilities might be.
For instance I've heard from a very reliable source that some kids with a high CARS score can communicate better than other kids with a lower score, when you would think the opposite was true. So in a very real sense, you are somewhat in the dark about it and the only illumination comes from reading all you can and from actually starting the journey with your child. One of the saddest things I've heard is of the occasional new parents, who after receiving the diagnosis, come to the autism school my daughter attends, are offered a place in the early intervention program, only to turn it down because they, for whatever reason, cannot accept the diagnosis for their child, delaying the start of their journey.
So it makes it doubly hard to explain to family and friends because one of the first things everyone wants to know along with can it be cured (it can't) is how affected is your child? The only real answer is to wait and see, but in this age of instant everything, no one wants to hear that, so you explain as best you can what might be the case and you talk about your child's current behaviours. But what happens when your child starts behaving, well, oddly in front of strangers? Naturally you want to explain as best you can and very often, other than ignoring any looks coming your way, the best thing you can think of is to say your child has autism, it's like a shield you can protect you and your child with.
Personally, I'm loath to use this autism shield, especially in front of my daughter as I wonder about the effect it might have on her, if she were to ever wonder one day exactly why does dad say that? Not because I'm hiding her condition from her, but I want her to be able to think she is just as good as everyone else. But other parents often do say it and I completely understand the reasons why, it can be a real circuit breaker. But like all things everywhere, the autism shield can be prone to failure.
A friend of mine with an autistic son was at a well known local restaurant for a Sunday lunch. Like any kid in a restaurant, he got restless and wandered off a little way. At least as far as another table, where a man was seated with his car keys resting on the table. The keys caught the little boy's eyes and he reached out and touched them, nothing more and the man snatched the keys up and called out to my friend to control his child. My friend apologized and explained that his son had autism and meant nothing by it. The man retorted that he didn't care, that he was there at the restaurant to have a good time and my friend's son was spoiling it for him. My friend walked over to the table and reached out his arm to shepherd his son back to their table when the man leapt out of his seat and punched him in the eye, no warning, no provocation.
The police were called and the man was given a very stern lecture by a police women who had some coincidental experience with autism, but she reported to my friend that this person simply didn't give a fig. I ought to white hot with rage, but I'm not. I've seen it all before with my own daughter, in a pub bistro on a Sunday afternoon when the bistro manager took objection to her touching a fork on another table in a nearly deserted dining room. The shield didn't work then either.
Autism Awareness Week
The post I've got for you today is in a similar vein to the topic I wrote about, just with a lot more humour.
For instance I've heard from a very reliable source that some kids with a high CARS score can communicate better than other kids with a lower score, when you would think the opposite was true. So in a very real sense, you are somewhat in the dark about it and the only illumination comes from reading all you can and from actually starting the journey with your child. One of the saddest things I've heard is of the occasional new parents, who after receiving the diagnosis, come to the autism school my daughter attends, are offered a place in the early intervention program, only to turn it down because they, for whatever reason, cannot accept the diagnosis for their child, delaying the start of their journey.
So it makes it doubly hard to explain to family and friends because one of the first things everyone wants to know along with can it be cured (it can't) is how affected is your child? The only real answer is to wait and see, but in this age of instant everything, no one wants to hear that, so you explain as best you can what might be the case and you talk about your child's current behaviours. But what happens when your child starts behaving, well, oddly in front of strangers? Naturally you want to explain as best you can and very often, other than ignoring any looks coming your way, the best thing you can think of is to say your child has autism, it's like a shield you can protect you and your child with.
Personally, I'm loath to use this autism shield, especially in front of my daughter as I wonder about the effect it might have on her, if she were to ever wonder one day exactly why does dad say that? Not because I'm hiding her condition from her, but I want her to be able to think she is just as good as everyone else. But other parents often do say it and I completely understand the reasons why, it can be a real circuit breaker. But like all things everywhere, the autism shield can be prone to failure.
A friend of mine with an autistic son was at a well known local restaurant for a Sunday lunch. Like any kid in a restaurant, he got restless and wandered off a little way. At least as far as another table, where a man was seated with his car keys resting on the table. The keys caught the little boy's eyes and he reached out and touched them, nothing more and the man snatched the keys up and called out to my friend to control his child. My friend apologized and explained that his son had autism and meant nothing by it. The man retorted that he didn't care, that he was there at the restaurant to have a good time and my friend's son was spoiling it for him. My friend walked over to the table and reached out his arm to shepherd his son back to their table when the man leapt out of his seat and punched him in the eye, no warning, no provocation.
The police were called and the man was given a very stern lecture by a police women who had some coincidental experience with autism, but she reported to my friend that this person simply didn't give a fig. I ought to white hot with rage, but I'm not. I've seen it all before with my own daughter, in a pub bistro on a Sunday afternoon when the bistro manager took objection to her touching a fork on another table in a nearly deserted dining room. The shield didn't work then either.
Autism Awareness Week
The post I've got for you today is in a similar vein to the topic I wrote about, just with a lot more humour.
Labels: understanding autism
Tuesday, May 15, 2007
Barbecued Salmon
My nephew went fishing a couple of weeks ago and landed a whopper, a 3.5 kg salmon. He was never going to miss, fishing as he was in a trout and salmon farm at Buxton. Not only did the fish bite hard at his bait, it also bit hard at his parents wallet, costing a massive $65 at the scales. The fish was gutted for them but not filleted and when they got home, it was placed in the freezer, awaiting a suitable occasion and me - ah, the joys of being able to cook. Don't get me wrong, my sister-in-law is an excellent cook and is a dab hand at preparing fish straight from the boat, all the way to the pan, but a large, whole salmon is a daunting thing indeed.
So this Mother's day I was asked to cook this enormous fish for our extended family, but what to do? I had never cooked with a fish so large before and there was no fish kettle to cook it in, if there was, I almost certainly would have carefully poached it. I cast around for information when I saw not so much a recipe, but a simple technique for dealing with a large fish. First, the fish had to be filleted. I've seen the odd person do this at the fishmongers and elsewhere, with large fish, they usually insert the knife at the top of the fish, using the dorsal fin for a guide, working their way through along the entire length.
Well that seemed like a good idea, but then after making a long cut I realized that the dorsal fins on a salmon aren't really long enough to be a good guide and the result was one badly butchered fillet. Time for a rethink. I've been filleting fish all my life and I normally start the cut at the head and slide my knife down along the fish using the internal bones as a guide for the knife, so that's what I did and an almost perfect fillet was the result.
Then I got some aluminium foil, a double thickness, a bit longer than the fillets and laid the fillet on the foil, skin side down, then crimped up the sides all around, but not enclosing the fish, ensuring that any juices couldn't run away. Next I seasoned the fish, heavily with salt and generously with pepper, then I melted 200 g butter and to this added a great big handful of chopped dill and parsley and painted some of this on the fish and left it at room temperature for an hour, to take on flavour.
The barbecue was heated up on the grill bar side with the hood down and when it was hot, the foil packages were placed directly on the grill bars and the heat turned to low under the fish, the side burners were off, the hood was pulled down. I checked every five minutes and basted the fillets with the herbed butter until they were cooked through, which took about 20-25 minutes and the temperature under the hood was a fairly constant 125 c.
Do you know how it is when you try something for the first time and when you come to try it, the result is more delicious than you expected? My first taste of the fish was amazing, it was juicy and succulent with a mild herb flavour, one taste was definitely not enough. There was even a confirmed meat eater there who, well, tolerated fish, but ate up his entire portion and didn't eat the meat that had been specially cooked for him. I love it when a dish works out like that, and the bonus - I made four mums very happy.
Autism Awareness Week
Every day this week I'm going to point to a post that highlights some aspect of autism. Today's post was written by a father of an autistic child and tells poignantly how he actually felt about his child when autism was diagnosed and the subsequent journey and epiphany he later had.
So this Mother's day I was asked to cook this enormous fish for our extended family, but what to do? I had never cooked with a fish so large before and there was no fish kettle to cook it in, if there was, I almost certainly would have carefully poached it. I cast around for information when I saw not so much a recipe, but a simple technique for dealing with a large fish. First, the fish had to be filleted. I've seen the odd person do this at the fishmongers and elsewhere, with large fish, they usually insert the knife at the top of the fish, using the dorsal fin for a guide, working their way through along the entire length.
Well that seemed like a good idea, but then after making a long cut I realized that the dorsal fins on a salmon aren't really long enough to be a good guide and the result was one badly butchered fillet. Time for a rethink. I've been filleting fish all my life and I normally start the cut at the head and slide my knife down along the fish using the internal bones as a guide for the knife, so that's what I did and an almost perfect fillet was the result.
Then I got some aluminium foil, a double thickness, a bit longer than the fillets and laid the fillet on the foil, skin side down, then crimped up the sides all around, but not enclosing the fish, ensuring that any juices couldn't run away. Next I seasoned the fish, heavily with salt and generously with pepper, then I melted 200 g butter and to this added a great big handful of chopped dill and parsley and painted some of this on the fish and left it at room temperature for an hour, to take on flavour.
The barbecue was heated up on the grill bar side with the hood down and when it was hot, the foil packages were placed directly on the grill bars and the heat turned to low under the fish, the side burners were off, the hood was pulled down. I checked every five minutes and basted the fillets with the herbed butter until they were cooked through, which took about 20-25 minutes and the temperature under the hood was a fairly constant 125 c.
Do you know how it is when you try something for the first time and when you come to try it, the result is more delicious than you expected? My first taste of the fish was amazing, it was juicy and succulent with a mild herb flavour, one taste was definitely not enough. There was even a confirmed meat eater there who, well, tolerated fish, but ate up his entire portion and didn't eat the meat that had been specially cooked for him. I love it when a dish works out like that, and the bonus - I made four mums very happy.
Autism Awareness Week
Every day this week I'm going to point to a post that highlights some aspect of autism. Today's post was written by a father of an autistic child and tells poignantly how he actually felt about his child when autism was diagnosed and the subsequent journey and epiphany he later had.
Labels: salmon, understanding autism
Monday, May 14, 2007
Autism Awareness Week
This week in Australia is autism awareness week and for those of you who are interested, I'm going to attempt the daunting task of explaining a bit about autism. It's daunting in the sense that I am in fact not autistic and can never fully understand or comprehend what it really is like to have this condition. What I'm going to write about are observations and whatever information I've been able to gather.First of all, what is autism?
Well, to give it its full title, it's autism spectrum disorder or ASD for short and it would be rather nice if someone were to get rid of the disorder part, for reasons that should become clear. What Autism Victoria has to say about it is this...
Definitions
The way people think about autism has changed in recent years. It is best described as a group of disorders with a similar pattern of behaviour in three key areas - communication, social interaction and imaginative thought.
The currently favoured term is Autism Spectrum Disorder, with the word 'spectrum' used because no two people with an Autism Spectrum Disorder are exactly alike.
What is an Autism Spectrum Disorder?
As the term suggests, there is no one diagnosis or label. Rather there are several labels that place people at different points on the spectrum. At one end of the spectrum diagnostic labels such as "Asperger Syndrome", "High Functioning Autism" and "PDD-NOS" are used. At the other end of the spectrum you will find labels such as "Autism", "Classic Autism" and "Kanner Autism".
Diagnosis
There is no specific diagnostic test for Autism Spectrum Disorder. The best way to get a diagnosis is via a multi disciplinary assessment. For children, this involves having your child tested by a number of professionals, who will provide you with the information you need to make decisions about program and treatment approaches. For adults, either a psychologist or psychiatrist experienced with Autism Spectrum Disorders can make a diagnosis.
The age of diagnosis these days ranges from approximately 18 months through to adulthood, depending on circumstances. A diagnosis of Autism Spectrum Disorder will only be made if the 'autistic like' pattern of behaviour is apparent before the age of three years. Sometimes a provisional diagnosis is made if the child is very young, and a reassessment at a later date is recommended.
Think you don't know someone with autism? Think again. According to the first Australian survey on autism prevalence, the study has concluded that one in 160 Australian children aged between 6 and 12 years have an autism spectrum disorder (ASD) - for a full report, go to the Australian Advisory Board on Autism Spectrum Disorders webpage.
My daughter is amongst the one in 160, so I have a pretty fair idea of what autism is and I also have a few ideas about what it's not. The thing is, when you are born with autism it is an integral part of you and helps define who you are as a person - autism is not a separate part of you that can be treated and got ridden of, it becomes who you are, for there is no cure for it, only treatments and strategies that help autistic people to become part of society, if that's what they want, and adapt to dealing with what are referred to as neurotypical people, that's you and me, because from an autistic point of view, we, the neurotypicals, can be as unfathomable as autistic people can sometimes seem to us.
To illustrate this last point, imagine you go to a country where they speak another language and you start trying to communicate with the locals. You try so hard to make yourself understood and the natives try just as hard to understand you, but without a common language, it all ends in frustration on both sides, that is something autistic people have to with live with every day. But what makes it difficult for neurotypicals is that even if you do know someone with autism and manage to hammer out a common language, when you bump into another autistic person, your new language, in all probability, won't be comprehensible to them. That is why it is referred to as an autistic spectrum, no two people with autism are exactly the same.
However, there are some things you can do to make it easier to talk to someone with autism. One common feature is that often processing verbal information takes an autistic person a bit longer. If you ask a question, you need to allow extra time for a reply and resist the urge to repeat or rephrase the question, as this can cause the whole process to start from the beginning again. Because you in all likelihood don't know where a person is on the spectrum, don't be surprised by an answer that is not what you expected, autistic people can be very literal and take you at your word, when you in fact meant to say or ask something else.
There is no question that it takes patience to be with someone who has autism. I always thought of myself as a patient person but didn't learn the real meaning of patience until my last daughter was born. It was after an incident when M was about two, when she did something that tipped me over an edge and I'm now ashamed to say that I raged at her. But I had a concurrent out-of-body experience where I could see what I was doing and at the same time could also see that M had absolutely no idea why her dad had turned into some kind of monster. It was this insight that led me to understand patience was just not the ability to stand in a line uncomplainingly, but to be able to see past behaviours that M has no control of, and learn how to teach her to deal with them.
Shopping is one area that can give parents of autistic children the heeby-jeebies. It can turn into a nightmare in seconds, with their children grabbing things off the shelves, running amok or even having a meltdown right in the store. M was no different, so what I did was to take her shopping in increments. When I didn't really need to shop, I would take her to buy just one thing and leave straight away. This went on for months, sometimes it was great, sometimes it wasn't, but gradually over time we built up the length of the shopping trip, until we could buy several items at a time, then when M wanted to buy something, I would let her and like all kids, one thing was never enough, then it was time to learn choice, that she could have one thing and one thing only, but she had to choose. At the moment we are up to waiting our turn to be served. Sound familiar? It should, it's what all kids have to learn regardless.
And that's the point, my daughter is the same as every other child and responds just like everyone else to parenting. We have certainly had to break things down, to make them manageable, but at the end of the day she is a human being, expressing herself in her own unique way and perhaps the key to it all is acceptance. I think if you spoke to any autistic person, all they would ask of you is to accept them just the way they are.
If you would like to get some idea from an autistic point of view about how they are viewed, look here.
Labels: understanding autism
Wednesday, May 02, 2007
Where's The Meatloaf?
Have you seen that scene from Wedding Crashers, where John Beckwith (Owen Wilson) is seeking solace from the breakdown in his relationship and goes to see Chaz (Will Ferrell), who is meeting girls by crashing funerals? In the scene, Chaz explains to John how he does it and offers him some food, repeatedly yelling to his unseen mother, "Ma, bring some meatloaf", at the top of his lungs.
You wouldn't think that would make a very good parenting strategy, now would you?
It's just that some nights when we try to settle M in bed, she constantly shouts in a way similar to Chaz for mum to come and so we would jokingly whisper between ourselves that she must want some meatloaf, at least we thought we were whispering until the night she called out she didn't want any meatloaf. We continued with our joke for a little while, but M was the equal of us. One night my wife was sort of ignoring her calls, when M said, "Ma, I want some meatloaf!"
In order to give D a break, I went to her room saying in as feminine voice as possible that I was the 'real' mummy, we all had a laugh at that including M, who is used to me being in character as a pirate and cajoled me to bring the other mummy, but I insisted that I was her. This went on for a few months, whenever I gave D a rest.
Then last night something amazing happened. D was watching her favourite program when M called out for her from bed. I got up and called to her in my 'mummy' voice that real mummy was coming. When I got to her room, she looked me straight in the eye and said, "I don't want real mummy, I want regular mummy." Now that might not seem much to anyone, but I'm here to tell you, for someone young with autism, that's an absolute triumph of language skills coupled with the ability to understand an abstract concept, two key areas that are affected by autism.
We both laughed and I almost cried with happiness.
You wouldn't think that would make a very good parenting strategy, now would you?
It's just that some nights when we try to settle M in bed, she constantly shouts in a way similar to Chaz for mum to come and so we would jokingly whisper between ourselves that she must want some meatloaf, at least we thought we were whispering until the night she called out she didn't want any meatloaf. We continued with our joke for a little while, but M was the equal of us. One night my wife was sort of ignoring her calls, when M said, "Ma, I want some meatloaf!"
In order to give D a break, I went to her room saying in as feminine voice as possible that I was the 'real' mummy, we all had a laugh at that including M, who is used to me being in character as a pirate and cajoled me to bring the other mummy, but I insisted that I was her. This went on for a few months, whenever I gave D a rest.
Then last night something amazing happened. D was watching her favourite program when M called out for her from bed. I got up and called to her in my 'mummy' voice that real mummy was coming. When I got to her room, she looked me straight in the eye and said, "I don't want real mummy, I want regular mummy." Now that might not seem much to anyone, but I'm here to tell you, for someone young with autism, that's an absolute triumph of language skills coupled with the ability to understand an abstract concept, two key areas that are affected by autism.
We both laughed and I almost cried with happiness.
Labels: understanding autism
