Autism Acceptance,
This being the end of autism awareness month I though this might be an appropriate time to post something I've been thinking about for a while.
April is when we as the autism community come together and ask the non autism community to learn about autism ,be aware of autism and learn to accept that autism is part of the world. But what level of acceptance are we looking to achieve? What level of acceptance are we, the ones who live with it everyday, ready to accept?
We accept our loved ones diagnosis, that's a given. We accept that others have it too. We accept that currently there is no truly known cause and no known cure or cure like treatment to eradicate the symptoms of autism. But do even we truly accept autism?
If you go to the doctor and he runs some tests and looks at the results of the first few tests back and says to you I think you might have cancer we accept that and move on. He doesn't say I think you have cancer but let me run a lot more tests to be 1000% sure because we dont want to label you as having cancer until we are sure because the label will follow you forever and ruin your life if we are wrong about what you have. No we say okay doc, lets start treatment for cancer and if it ends up being wrong we'll change the diagnosis and move on to a different treatment.Why the perceived shame in an autism working or final diagnosis among medical professionals?
Autism is a medical diagnosis. We should start treating it like a medical condition. No better and no worse than any other condition out there such as asthma, allergies, high blood pressure, etc. We need to bring the same level of acceptance to society in general. All medical conditions require treatment and life style adjustment to accommodate the condition.
Its been proven time and again that the earlier treatment starts the better
the final outcome in autism. Kids who get intensive therapy very early
on in life do FAR better than those who get help later. Doctors need to start using working diagnosis of autism to start treatment before they come up with a final diagnosis which often has to wait until a team of professionals do a ream of tests and then deliberate on the results for a while. Even in the best of situations that means our children loose 2-3 months of treatment when their brains are the most flexible and fluid and able to make the most of the therapy treatments. For most of us that really translates to 6-12 months lost and that is not what should be happening. There are no negative side effect of autism therapy for those who actually dont have the condition so there is no risk of harm to the patient to start treatment NOW and wait for the final diagnosis.
Our medical professionals need to start treating autism like any other condition. No more shame in the diagnosis. If the rate of autism is now 1 in 88 and 1 in 54 boys we need to bring autism out of the medical "closet" and accept its here to stay and just like any other medical condition it needs to be treated openly and with respect. Once we no longer have any shame attached to the actual diagnosis then we can work on acceptance of those with the condition in daily life.
Saturday, April 28, 2012
Saturday, March 3, 2012
Autism Awareness
This is in response to many posts I have seen about Autism awareness and other issues within the autism community.
Currently it seems there are 2 very different camps in autism and they do not work together for the community as a whole.
One camp is the very high functioning or aspergers parents who a) who want acceptance for their children who are almost neurotypical and present their children as the only face of autism and b) think the idea of a cure is a threat to their children's existence and uniqueness. They are the ones who blast the idea of a cure and push for people first language, ie My child has autism, its not who they are. Their children are not autistic, they have autism, like others might have a cold. They want their children accepted as the new version of normal and for others to not see autism as a disability but another ability.
The other camp is the parents of children FAR more disabled by autism. They look for cures in very unlikely places and often are looking for somewhere to place the blame for their child's condition. They also seem to only allow you to join their camp if you win a contest of my child is more disabled than yours. If your child is too verbal or goes to regular school then you cant possibly know what its "really" like to raise a child with autism. If your child is high functioning then they dont really have autism and are just looking for free ssdi or other benefits.
I would love to see a third camp arise out of the ashes of both other camps. Our child have autism. They are autistic. All of us have difficulties and challenges raising our children. We need to start acceptance at home within the autism community. Accept that all parents of children with autism face huge challenges and difficulties. Accept that what works for one family doesn't work for all.
Our children deserve to have research done into autism so that the OPTION of a cure is variable. Do I think all children should be cured upon diagnosis? No. That's not appropriate. I doubt the cure if its ever found will be without risk or side effects. The end result HAS to out weight the possible negative effects it will have on the individual. But the chance should be there to remove the truly debilitating and negative aspects of autism. All of our children should have the chance for an independent fulfilling life. Without a cure or far more effective treatment options that is not possible for far too many of our children with autism currently.
Our children deserve to have the level of awareness and understanding of their condition raised to the point that we are not fighting with schools and other programs or society for inclusion and support every day of our children's lives. The level of awareness and understanding should be high enough we do not feel compelled to live our lives in the shadow to avoid the judgmental and hateful looks, comments, actions, etc of society in general. Society should be aware enough to offer services to our community like sensory friendly films EVERYWHERE because its the right thing to do.
That is the awareness I fight for. I have been blessed to have 2 high functioning children on this autism journey. I do not forget for one second that many are not that fortunate. While I do not think my eldest with aspergers would want to be "cured" I'm sure he would love to not be so physically sensitive to touch. While my youngest may not need a cure as he is very high functioning autism I think he would love to not have the verbal apraxia he fights everyday just to express himself and to interact with the world he lives in. He would love to not have most alarm bells or a person shouting in the same room cause him physical pain. Both would love to have far more friends than they do because of the social effects of autism. And research along the way to a cure could provide answers to remove the negative benefits of autism for those who choose.
But we are all on the same journey and there are no separate levels of passengers on this ship (first class, steerage, etc). We are all parents or people affected by autism. No one person's challenges with autism should be denigrated because they are not the same as yours and are perceived to be less than anyone else's. We as the community most affected by autism should work together to achieve this one goal for our children, Awareness that they have a disability, Understanding by society as a whole of what that disability encompasses and Acceptance of our children into general society without reservation.
To achieve this goal we need to work together to educate society in general and our own autism community what the face of autism looks like by showing as many faces as possible from all levels of the spectrum. Now is the time to stop hiding in the shadows and hiding our children's disability like we are ashamed of it. Force society to remove the "shame" of autism and welcome our children into it.
We need to work together to dictate what accommodations should be required for our children to go out in society much like the requirements for the physically disabled (ramps, elevators, door widths, etc). Do we want all elementary students to be offered an 1:1 aide and ABA therapy if they are diagnosed with autism? Do we want homework accommodations mandated? Do we want noise volumes and light levels regulated in the classrooms and other public spaces? Do we want teachers,other educators, police , fire and other first responders required to have general training in autism, and how to handle meltdowns and other outbursts, etc? This is more important than research into why or cures. Its obvious that autism is extremely complex and will take years or decades to truly understand the biological workings of it before we can think of truly effective treatments or even a cure. In that time thousands of our children will age out of the safety nets in place during the school years. They need our action now not decades later.
In the end it may require a cure of some kind to be researched and found to ultimately provide the best level of accommodation for some of our children. We as the autism community have the opportunity through education of society to shape what that cure looks like and whom it is offered to. We as the community affected by autism have the opportunity to define autism to ensure none of our children are excluded from needed services. Any parent who honestly says they wouldn't change any aspect of their child with autism if given a chance either isn't being honest with themselves or their child doesn't have autism. Otherwise why would we fight for therapy services and accommodations on their IEPs? Honestly not everything with autism is champagne and roses.
But regardless of any cure now or in the future we are a large community. One that adds a new member every minute of the day and its time to join together.To accept each other as members of this community without judgement as to our worthiness to belong. We need to make autism deniers like holocaust deniers unacceptable. Autism is real and our children have it. Society must make a place for our children because there are far too many of them to hide any more. And we in the community need to work together to achieve our goals and create a better life for our children. Its time to join the camps and stop the in fighting and judgement of each other, for our children because that is why we are all here.
Currently it seems there are 2 very different camps in autism and they do not work together for the community as a whole.
One camp is the very high functioning or aspergers parents who a) who want acceptance for their children who are almost neurotypical and present their children as the only face of autism and b) think the idea of a cure is a threat to their children's existence and uniqueness. They are the ones who blast the idea of a cure and push for people first language, ie My child has autism, its not who they are. Their children are not autistic, they have autism, like others might have a cold. They want their children accepted as the new version of normal and for others to not see autism as a disability but another ability.
The other camp is the parents of children FAR more disabled by autism. They look for cures in very unlikely places and often are looking for somewhere to place the blame for their child's condition. They also seem to only allow you to join their camp if you win a contest of my child is more disabled than yours. If your child is too verbal or goes to regular school then you cant possibly know what its "really" like to raise a child with autism. If your child is high functioning then they dont really have autism and are just looking for free ssdi or other benefits.
I would love to see a third camp arise out of the ashes of both other camps. Our child have autism. They are autistic. All of us have difficulties and challenges raising our children. We need to start acceptance at home within the autism community. Accept that all parents of children with autism face huge challenges and difficulties. Accept that what works for one family doesn't work for all.
Our children deserve to have research done into autism so that the OPTION of a cure is variable. Do I think all children should be cured upon diagnosis? No. That's not appropriate. I doubt the cure if its ever found will be without risk or side effects. The end result HAS to out weight the possible negative effects it will have on the individual. But the chance should be there to remove the truly debilitating and negative aspects of autism. All of our children should have the chance for an independent fulfilling life. Without a cure or far more effective treatment options that is not possible for far too many of our children with autism currently.
Our children deserve to have the level of awareness and understanding of their condition raised to the point that we are not fighting with schools and other programs or society for inclusion and support every day of our children's lives. The level of awareness and understanding should be high enough we do not feel compelled to live our lives in the shadow to avoid the judgmental and hateful looks, comments, actions, etc of society in general. Society should be aware enough to offer services to our community like sensory friendly films EVERYWHERE because its the right thing to do.
That is the awareness I fight for. I have been blessed to have 2 high functioning children on this autism journey. I do not forget for one second that many are not that fortunate. While I do not think my eldest with aspergers would want to be "cured" I'm sure he would love to not be so physically sensitive to touch. While my youngest may not need a cure as he is very high functioning autism I think he would love to not have the verbal apraxia he fights everyday just to express himself and to interact with the world he lives in. He would love to not have most alarm bells or a person shouting in the same room cause him physical pain. Both would love to have far more friends than they do because of the social effects of autism. And research along the way to a cure could provide answers to remove the negative benefits of autism for those who choose.
But we are all on the same journey and there are no separate levels of passengers on this ship (first class, steerage, etc). We are all parents or people affected by autism. No one person's challenges with autism should be denigrated because they are not the same as yours and are perceived to be less than anyone else's. We as the community most affected by autism should work together to achieve this one goal for our children, Awareness that they have a disability, Understanding by society as a whole of what that disability encompasses and Acceptance of our children into general society without reservation.
To achieve this goal we need to work together to educate society in general and our own autism community what the face of autism looks like by showing as many faces as possible from all levels of the spectrum. Now is the time to stop hiding in the shadows and hiding our children's disability like we are ashamed of it. Force society to remove the "shame" of autism and welcome our children into it.
We need to work together to dictate what accommodations should be required for our children to go out in society much like the requirements for the physically disabled (ramps, elevators, door widths, etc). Do we want all elementary students to be offered an 1:1 aide and ABA therapy if they are diagnosed with autism? Do we want homework accommodations mandated? Do we want noise volumes and light levels regulated in the classrooms and other public spaces? Do we want teachers,other educators, police , fire and other first responders required to have general training in autism, and how to handle meltdowns and other outbursts, etc? This is more important than research into why or cures. Its obvious that autism is extremely complex and will take years or decades to truly understand the biological workings of it before we can think of truly effective treatments or even a cure. In that time thousands of our children will age out of the safety nets in place during the school years. They need our action now not decades later.
In the end it may require a cure of some kind to be researched and found to ultimately provide the best level of accommodation for some of our children. We as the autism community have the opportunity through education of society to shape what that cure looks like and whom it is offered to. We as the community affected by autism have the opportunity to define autism to ensure none of our children are excluded from needed services. Any parent who honestly says they wouldn't change any aspect of their child with autism if given a chance either isn't being honest with themselves or their child doesn't have autism. Otherwise why would we fight for therapy services and accommodations on their IEPs? Honestly not everything with autism is champagne and roses.
But regardless of any cure now or in the future we are a large community. One that adds a new member every minute of the day and its time to join together.To accept each other as members of this community without judgement as to our worthiness to belong. We need to make autism deniers like holocaust deniers unacceptable. Autism is real and our children have it. Society must make a place for our children because there are far too many of them to hide any more. And we in the community need to work together to achieve our goals and create a better life for our children. Its time to join the camps and stop the in fighting and judgement of each other, for our children because that is why we are all here.
Tuesday, March 15, 2011
We could all use a little of that Charlie Sheen drug sometimes
I was at the local school budget meeting last week in my hometown. Its a small town only about 15k people between 6 towns in a 40 mile area with about 10k in my town, the biggest. but even in a close knit small new England town there exist close mindedness on a scale unbelievable. Mom-nos who doesn't live near me even heard about it. She posts about it here, http://www.hopefulparents.org/blog/2011/3/11/when-the-political-is-personal.html .
she puts it more eloquently than I can. She also doesn't live here and so has not had to spend the last week trying to find her happy place so that the lesson she teaches her children is not how to fillet an asshole but instead how to proactively and civilly achieve political change.
she puts it more eloquently than I can. She also doesn't live here and so has not had to spend the last week trying to find her happy place so that the lesson she teaches her children is not how to fillet an asshole but instead how to proactively and civilly achieve political change.
Monday, March 7, 2011
Words of Wisdom from one on the spectrum
if you judge a fish by its ability to climb a tree,... it will live its whole life believing that it is stupid.
— Albert Einstein
— Albert Einstein
Tuesday, February 1, 2011
back to normal
Its been a while since my last post. Life at times seems to hit the fast forward button and before you know it months have passed. Life with kids is never boring and life with 2 on the spectrum is even less so. Between birthdays, doctor appointments, IEP meetings and just life in general I never seem to have a moment to sit down and write. I'm hoping this year will be different and I will be able to post far more often than I have in the past.
Since I last posted somethings have changed alot.
My Eldest FINALLY has an IEP. You wouldn't think with a note from his specialist that he has adhd and aspergers that it would take 4 years to get one but in his school district it does. The funny thing is he got it for his ADHD diagnosis not his Aspergers. And yet its his aspergers that causes the most problems at home, not his ADHD. It doesn't really matter to me what they put on the paper just as long as he gets the services he needs. So for the first time in a very very long time he actually has a b average in school. When I look at his report card I kinda start to see the light at the end of the tunnel that represents him living independently.
He also turned 16 this last year so I now look forward to teaching him to drive this summer. When you tend to get overloaded with external stimuli the thought of putting a 2 thousand pound death causing machine in your hands is a scary proposition. I think this is going to be a slow process and Mom will need regular self medication at Friendlies with forbidden chocolate ice cream. and wine at home after wards.....
My youngest is now in kindergarten. We lucked out, he is in the best kindergarten class we could hope for in our local area. A mixed inclusive class that this year has 5 students in it with a teacher with 2 in class aides. a 1:2 ratio is a wonderful thing. He is loving class and I say with some pride is the smartest kid in the class. He is reading at a 2nd grade level and doing math at a similar level. The teacher has commented that its really hard to call on him in class because he is so far ahead in those areas that he tends to make the other kids feel bad that they cant catch on so quick. She does a really good job of challenging him without rubbing his brains in their faces. So this year has been a time to really work on his other areas such as social skills and get lots of time working on his motor skills and such. Next year as he transitions back into a regular classroom will be a challenge. The school system tends to like the one size fits all approach to lesson planning and "teaching" him 1st grade math and reading when he is so much farther ahead of that will only lead to trouble. A bored kid is a kid causing trouble. a Genius level IQ bored kid is a super villain in the making.... Dr Doom must have been bored a lot in school as a kid.
He has a new obsession though. He loves the game of monopoly. He plays the board version (when we have the time), a version on his computer and another version on the old game cube we have. And when none of those 3 options are open he makes boards with his legos and plays that way with himself *g*. At least its a break from Thomas and friends all day.
So life is pretty much back to normal around here,what ever normal is...
Since I last posted somethings have changed alot.
My Eldest FINALLY has an IEP. You wouldn't think with a note from his specialist that he has adhd and aspergers that it would take 4 years to get one but in his school district it does. The funny thing is he got it for his ADHD diagnosis not his Aspergers. And yet its his aspergers that causes the most problems at home, not his ADHD. It doesn't really matter to me what they put on the paper just as long as he gets the services he needs. So for the first time in a very very long time he actually has a b average in school. When I look at his report card I kinda start to see the light at the end of the tunnel that represents him living independently.
He also turned 16 this last year so I now look forward to teaching him to drive this summer. When you tend to get overloaded with external stimuli the thought of putting a 2 thousand pound death causing machine in your hands is a scary proposition. I think this is going to be a slow process and Mom will need regular self medication at Friendlies with forbidden chocolate ice cream. and wine at home after wards.....
My youngest is now in kindergarten. We lucked out, he is in the best kindergarten class we could hope for in our local area. A mixed inclusive class that this year has 5 students in it with a teacher with 2 in class aides. a 1:2 ratio is a wonderful thing. He is loving class and I say with some pride is the smartest kid in the class. He is reading at a 2nd grade level and doing math at a similar level. The teacher has commented that its really hard to call on him in class because he is so far ahead in those areas that he tends to make the other kids feel bad that they cant catch on so quick. She does a really good job of challenging him without rubbing his brains in their faces. So this year has been a time to really work on his other areas such as social skills and get lots of time working on his motor skills and such. Next year as he transitions back into a regular classroom will be a challenge. The school system tends to like the one size fits all approach to lesson planning and "teaching" him 1st grade math and reading when he is so much farther ahead of that will only lead to trouble. A bored kid is a kid causing trouble. a Genius level IQ bored kid is a super villain in the making.... Dr Doom must have been bored a lot in school as a kid.
He has a new obsession though. He loves the game of monopoly. He plays the board version (when we have the time), a version on his computer and another version on the old game cube we have. And when none of those 3 options are open he makes boards with his legos and plays that way with himself *g*. At least its a break from Thomas and friends all day.
So life is pretty much back to normal around here,what ever normal is...
Tuesday, July 13, 2010
Just a thought for today -
Autism awareness starts by recognizing that you probably know or are related to someone with autism. Take a look around you. There is probably someone you know or many someones who are on the spectrum. What can you do to assist or accept them? If everyone gave just a little bit of time to a person on the spectrum to assist them or to help them be accepted for who they are life would be that much easier and happier for those on the spectrum and their loved ones.
We're not asking for everything on a silver platter, just a moment a day. Stop a person with ASD from being bullied, don't look at the parent of a child having a meltdown due to being over stimmed like a strange alien from another planet that needs to leave, acknowledge that those on the spectrum have a right to exist and can contribute to society. Volunteer, walk in a fund raiser, etc. Just a moment a day from everyone can make a lifetime of happiness for so many.
Autism awareness starts by recognizing that you probably know or are related to someone with autism. Take a look around you. There is probably someone you know or many someones who are on the spectrum. What can you do to assist or accept them? If everyone gave just a little bit of time to a person on the spectrum to assist them or to help them be accepted for who they are life would be that much easier and happier for those on the spectrum and their loved ones.
We're not asking for everything on a silver platter, just a moment a day. Stop a person with ASD from being bullied, don't look at the parent of a child having a meltdown due to being over stimmed like a strange alien from another planet that needs to leave, acknowledge that those on the spectrum have a right to exist and can contribute to society. Volunteer, walk in a fund raiser, etc. Just a moment a day from everyone can make a lifetime of happiness for so many.
Wednesday, July 7, 2010
puzzles sadness and disappointment
Well today came a day I was hoping wouldn't come. By enrolling my child in a day care that specializes in special needs children and stresses inclusion and intermixing of nt and non nt children (nt= neurotypical) I had hoped that my sons challenging behavior would be worked around instead of excluding him from things. I was wrong.
Today was the big weekly field trip. They were going to a local-ish train yard for a ride. A was very excited as trains are his thing. ANY train floats his boat. They arrived there too late to ride the train so they opted to go to another attraction local to the yard. While at the other place A had issues listening, staying with the adults (he is a bit of a bolter , but this is nothing new, they KNEW this, its in his IEP they helped draft) and while on the way back to the center he opened his door that had not had the child locks activated on it scaring the driver. A never rides in my car without the locks activated so he really isn't used to the latch actually opening his door. But because of all this A has been un invited to the swim trip tomorrow to a local lake. We're in the northeast so you can imagine how hot it is right now , upper 90s and the dew point in the 70s makes for VERY uncomfortable weather. Add to that my last post where I mentioned just how much A loved swimming last week and you can imagine how upset I am about this. I was ciounting on the trip to help keep A cool since the heat only makes things much worse behavior wise for him.
I understand they are concerned for his safety BUT A has autism. They are supposed to be inclusive and trained to handle kids like him. They know him. This summer program is run to provide ESY (extended school year) services over the summer to kids making the transition to school from pre-school. I watched the school system exclude N from too many things due to his quirks before I knew what his diagnosis was and that exclusion was inappropriate. This incident with A just brings back all of that. I'm hoping this is a one time only thing because if they start excluding A from more trips that are being done as part of the ESY program with the school district I'm going to file a complaint with the school district about this. Exclusion is not an ongoing solution to the issue and the school isnt paying for him to not be included in the program.
I thought school and the teachers were supposed to mold themselves and their teaching style to make a place for each kid in their institution of learning? Not that the kid was to be bent, molded, changed to fit the teachers mode of teaching. My child is a puzzle piece and you cant change the piece's shape to fit the puzzle , you have to find the right place/orientation, etc for the piece.
There has to be a place or a program to fit our puzzle pieces... the problem is I cant seem to find it. Which really makes me sad and disappointed in society.
Today was the big weekly field trip. They were going to a local-ish train yard for a ride. A was very excited as trains are his thing. ANY train floats his boat. They arrived there too late to ride the train so they opted to go to another attraction local to the yard. While at the other place A had issues listening, staying with the adults (he is a bit of a bolter , but this is nothing new, they KNEW this, its in his IEP they helped draft) and while on the way back to the center he opened his door that had not had the child locks activated on it scaring the driver. A never rides in my car without the locks activated so he really isn't used to the latch actually opening his door. But because of all this A has been un invited to the swim trip tomorrow to a local lake. We're in the northeast so you can imagine how hot it is right now , upper 90s and the dew point in the 70s makes for VERY uncomfortable weather. Add to that my last post where I mentioned just how much A loved swimming last week and you can imagine how upset I am about this. I was ciounting on the trip to help keep A cool since the heat only makes things much worse behavior wise for him.
I understand they are concerned for his safety BUT A has autism. They are supposed to be inclusive and trained to handle kids like him. They know him. This summer program is run to provide ESY (extended school year) services over the summer to kids making the transition to school from pre-school. I watched the school system exclude N from too many things due to his quirks before I knew what his diagnosis was and that exclusion was inappropriate. This incident with A just brings back all of that. I'm hoping this is a one time only thing because if they start excluding A from more trips that are being done as part of the ESY program with the school district I'm going to file a complaint with the school district about this. Exclusion is not an ongoing solution to the issue and the school isnt paying for him to not be included in the program.
I thought school and the teachers were supposed to mold themselves and their teaching style to make a place for each kid in their institution of learning? Not that the kid was to be bent, molded, changed to fit the teachers mode of teaching. My child is a puzzle piece and you cant change the piece's shape to fit the puzzle , you have to find the right place/orientation, etc for the piece.
There has to be a place or a program to fit our puzzle pieces... the problem is I cant seem to find it. Which really makes me sad and disappointed in society.
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