Sunday, September 16, 2012

"Sharing With You, My World of Autism"

I would like everyone to give a warm welcome to my new friend, Michelle. She has agreed to share her story with Nathan's Voice. Please feel free to show your support by leaving her a comment at the end of her Guest Post. Thank you for your time!                                                     Lorrie

Hi my name is Michelle and I have autism. Just because I am autistic does not mean me or any of us are retarded. I am writing This paper to help the people that really care and want to learn and understand more about autism and for the autistic people and their families. I am also writing This to help the autistic People so they do not have to suffer like I did for ALL my school years and more but of course they have a lot more out there for autism  now but they did not back when I was going to school so I had to deal with crazy doctors and teachers and kids. If you ever hear people talk about autism and you hear them say a s d that means autism spectrum disorder. Autism is on a very wide spectrum. People with autism usually do very little to no eye contact with normal people except some do eye contact with their parents. In some cases some of us also have problems with being social and a lot of trouble learning normal things. We may also rock back and forth and we may flap our hands or flick our fingers and do other kinds of movements with our hands.  We may also wander around or run off and some of us may also move our feet in a way that is different from normal people and some of us may also spin ourselves in circles or spin things and may get very excited when other people spin things to. We may also scream or make other kinds of noises for no reason or when we are happy or mad or sad and it is up to our parents and friends or people taking care of us to figure out why we are making those noises or doing whatever we do. Some of us may also line up toy cars and blocks and other things. Some of us may also be very bothered by loud noises and a lot of people  and also by fluorescent lights which are what most stores and schools have and also other businesses so that makes it very tough for us to learn or be quiet or calm in those places so if possible please turn off those lights and either use a black light or let the sunshine in. Most of us have not quite but almost the same kind of hearing and smelling as dogs. We also notice details that most people don't even pay attention to at all. Noises that are not loud to normal people are extra extra times louder to us so please do not tell us oh thats not loud and please don't say oh come on get over it because you do not know what is loud to us because you are not inside of us. Some of us also do not except change well at all like when we have been in a place and then the next time we go in it is changed around and there is many more kinds of changes that we can't accept but they are different for all of us. 

Autism has it's good side and sometimes it's bad side. I am only going to explain one of the good and one of the bad side of my autism because it will be a lot to say and also I can not really speak for other autistic people  because what is the good and the bad for me may not be the same for others because even though we are autistic we are still all different in our own ways. One of my good side that a lot of autistic people share is that we are very very smart in certain ways but some of us may not know what we are really good at because to us it is just natural and one part of my bad side is that I don't always hear or understand people when they are talking to me or each other because of all the background noise normal people can filter it out but most autistic people can't. We also can't tune out background noise if we are watching tv or trying to listen to people say things to us or in stores or other places. It also bothers me when sometimes I don't understand or hear people when they are talking to me when I am in my own little world but I am not in my world half as much as  I was before  because mom worked  a lot with me but i mostly do go into it in stores because of all the noise and commotion. Please remember that we are not purposely ignoring you or anything so please don't take it personally a lot of us are in our own little worlds because your world is way to confusing for us so we have to go in ours sometimes some of us like me hear and understand what you say fully and we may even help you when we are out of our little worlds if our brains let us at the moment. Normal people can tune out the background noise and listen to a lot of different things at once but our brains don't let us do that all this and more is called sensory overload. 

Sensory overload can also cause some autistic people to get very upset and can be thought of as having a bad attitude or being rude and more but none of those things is how we really are. It also gets very frustrating that normal people don't understand my sensory feelings like the way I feel things which is a lot different than the way other people feel things and it makes me upset when people say oh that didn't hurt when they don't know what hurts us and what doesn't because they are NOT inside us if they touch my arms or head or hair lightly  I might say ow or get upset like scream or pull away because light touch can hurt some of us on certain parts of our body. Please be patient with us because some of our brains work like dial up modems when normal people's brains work like high speed modems. That means we can only take in a little information at a time and if people try to give us a lot of information that we can't handle our brains can go into shut down mode and we can have melt downs or go into our own little worlds because we get to confused and just can't handle it. If we can get ourselves out of the situation right away sometimes we don't even go into overload or at least not as bad. Sometimes there is nothing we can do but just have melt downs and then we are fine after it is all done. We all have melt downs in different ways. We can drop to the ground and have melt downs or just sit on the ground and sometimes it takes a lot to get us up or we can just have melt downs standing up or sitting in a chair a lot of different things can cause melt downs in us. Melt downs and a lot of our other behaviors are sort of like seizures because we can't control them and can't stop them until our brains are ready to let us. The only difference between our behaviors and seizures is that seizures damage a part of a persons brain each time when our behaviors don't. 

Autism is a neurological disorder not a psychological disorder and  should not be thought of as that and autistic people should not be thought of as crazy or weird but some autistic people will think of themselves as crazy or weird like I do. There is high functioning autism also known as aspergers where they can talk in normal sentences and can have way above normal IQ's. Then there is moderate autism and Then there is another kind of autism which is the low functioning kind where some of us can't talk unless we had the autism diagnosis as a very young kid so we could go to the right kind of schools and therapies for autism which I never had all my life. If you want to know all the names of the different kinds of autism you can look online. The lower functioning ones that do talk may not talk well or only say a few words or may repeat what they hear from tv shows or what people say plus more. Some people think that certain ones that are low functioning like me are not smart just because we can't talk but that does not mean we don't know things so people need to give us all a chance. We are very very smart in our own way also as a very young kid but people don't know it until somehow they figure it out.  We may also know things that you do not know and can do things that you can not do and things that are hard for you might be very very easy for us and things that are easy for you might be very very hard for us. They can tell how smart the high functioning ones are but one of the differences between us and the high functioning ones is that they can show how smart they are because they can talk and more when we can't show how smart we really are it gets very frustrating . My mom knew I was VERY smart from a very young age though because I could take things apart and fix them and then put them back together again exactly the same way.  Some of us also know and can do a lot more than normal kids know And can do them at a very young age. People think of us as either severely retarded or severely autistic just because we can't tell anybody things or show them how smart we are but we are not severe or retarded. Some of us don't have any computers or anything to talk with because people don't bother with many of us because they don't think we know anything like how to use a computer or anything else because a lot of people think just because we don't talk we are dumb and there is no hope for us which is not true at all so they not even try to give us a way to talk but what people do not know is that a lot of us know a lot more about computers than normal people do. I have a computer that talks for me at home and on the phone and at doctors appointments and some meetings. I now have another computer that can go in my pocket that I can use in stores and other places that I can't take the big one because the big one Is to heavy to carry around in places that do not have tables and also I can't use the mouse out in stores so I would have to use the touchscreen which I can not do without someone holding my hand to help me point and to help me steady my hand but if this computer was a lot smaller nobody would have to help me because I could just hold it and use my thumbs but it is fine for the things I do use it for. I now have an iPod touch that talks for me that I can take  places so now because of the iPod touch I no longer feel trapped in my silent world of autism because now I can share things and tell people things and ask them things and answer their questions and not just yes or no questions either. I couldn't do any of This before and now people understand me and I am no longer frustrated and now I can talk just like everybody else.  

Some of us may have some problems when we are born and when we get a little older the problems can get more and more and some of us are normal up until 1 or 2 or 3 years old. Autism can come at any of those ages or we can be born with it but some people may not notice it until those ages. If we once talked before our world of autism came we may no longer talk or we may go down to 1 or 2 words if that. We may also go backwards and stop doing the normal things that other kids can do that we could once do. We may also go more and more into our own little worlds. Some of us may talk again or we may still only be able to say 1 or 2 words or we may never start again. The high functioning kids may never stop talking and they may not go backwards either but they still do some autistic things like hand flapping and more. Even with all the stuff out there for autism now it is very tough for these kids to get diagnosed because their autism is so mild. I was not high functioning but it was still hard for me to get diagnosed because they chose not to know what was wrong with me back then. I started getting tested at around 4 years old and just because 1 doctor gave me 1 diagnosis then the next doctor would copy the other doctors diagnosis and then also come up with one of their own which were all still wrong. I was diagnosed with P. D. D. N. O. S at age 4 that means pervasive developmental disorder not otherwise specified which can be kind of on the autism side but they also diagnose you with that when they are not sure what is wrong with somebody but somehow that diagnosis was no longer 1 of them for me so they kept putting  really bad labels on me from 4 years on up. I went from doctor to doctor and They diagnosed me with all kinds of crazy behavioral and psychological disorders and treated me very badly for them in almost all my schools to the point of abuse and neglect. The schools were trying to get me diagnosed with what they wanted me to get diagnosed with. I had to suffer almost all my life for many years with the doctors and teachers and therapists and others. 

Some moms of autistic kids think it is the worst thing in the world that could happen to have an autistic kid and they cry and blame themselves. They also get blamed by other people sometimes even strangers who don't know what they are talking about which has happened all our life. Their families should think Of it as a good thing because like I said before it makes us very very smart in our own way. Mom knew I had a problem from the time  I was born or maybe a few months old because she did these little things that you do with normal babies and I didn't respond to them at all. She had watched a show about autism and saw how that little boy on there acted and she said to herself that's my baby. I skipped crawling and couldn't sit up alone and wasn't walking so because of all these things when I went for a check up at the doctors mom told him all that and he said oh she is fine but then by the time I was 11 months old and I still wasn't even standing up alone or doing any of those other things then he was worried so he was going  to have a physical therapist help me But he didn't have to because I finally started doing it. Mom tried to tell them for a VERY long time that she thought I was autistic but they did not listen to her and they were not nice to us at all either. The Psychologists and teachers and counselors got very very nasty with her to the point of telling her she was a very bad mom and they said and did a lot more really bad stuff. They all blamed mom for my problem they said it was her fault and that she needed to yell at me for everything and they also wanted her to go to parenting classes. Mom worked with me for a long time before I started school and even maybe a little bit after that because she still knew I was autistic. I would not be doing as good as I am doing now if it was not for mom because I definitely didn't get that good stuff in school or other places. I was supposed to go to preschool but they wouldn't accept me because I was still in diapers at the age of 4. When I was fully potty trained then they let me go to preschool. I only went for a short time because I was going to go to kindergarten when I turned 5 next year. I started in kindergarten at the school in my town. When I was about 8 1/ 2 years old the school wanted me sent away to a different school for really bad behavior kids.They also wanted me to go  to a psychiatric inpatient hospital for VERY crazy people. They gave mom 3 choices of schools and  a few choices of hospitals but she didn't want to pick any of them because she knew they were really bad for me but they said if she didn't pick one they would call DCF on her and have me taken away from her  so she ended up having to pick one of those schools because she didn't want to loose me. They still ended up calling DCF on her though and they said she was neglecting me because she didn't want to have me sent away so they took her to court. 

We had to visit all of the schools and hospitals one of the schools had animals so mom picked that one because I love animals but what mom didn't know was that after I was there for a while I was not going to be able to do anything with them because the teacher was making me trust her after I started to trust her then she would punish me for every little thing so I couldn't do anything with them anymore but some of the other kids were not in trouble much at all because the teacher liked them but the ones that were in trouble did really bad things like running away and climbing through ceilings and a whole lot more really bad stuff. There was one boy that they dragged to the timeout room and he somehow climbed up through the ceiling and jumped down on the counselors desk and then ran away so they had to call the cops. I never did any of those things but I still got punished for everything and anything anyways just because I was in a behavior class. I had to witness all of this stuff and see kids get dragged or restrained and hear them swear and more. It was not until many many more years that we found out I couldn't have chocolate but it was almost like I knew that way before then because I didn't eat it that much. One day it was this kids birthday and he had a chocolate cake and I wouldn't eat it. It was almost time to go home so because I didn't eat it the teacher sent my bus away and then when I still didn't eat it she took a whole handful of it and tried to shove it in my mouth and down my throat and I still didn't eat it so she made me sit behind a divider which is the first step before the timeout room. I was so frustrated and scared that I slapped her hand but I didn't do it very hard I would never hurt anybody purposely but I was only trying to stick up for myself because I had no way to talk all the horrible years that I was in school. She told me that I was being very rude by not eating the cake. She had never called mom to tell her that she sent my bus away it was getting late so mom called to see where I was and she told mom what happened and she said she was going to come and get me and the teacher said NO she would have the bus come back instead.  I just wanted my mommy because I was SO sad and scared because I thought I was never going to get to go home and that I was never going to see mom ever again. Finally the bus came back and I got to go home. 

Whenever I was trying to tell mom what I wanted I would grunt and reach out for it which is also part of autism that was before I knew sign language. When I grunted and reached out like that mom would say the name of the thing I wanted and then she would give it to me because she had gotten to know my grunts but she got yelled at very hard by doctors and others for giving me the thing but then many many years later I learned sign language. The only person that taught me sign language was the little deaf boy that went on my bus. No teachers or anyone else like that would even think of teaching me sign I guess it was because of my nasty diagnosis's. we went through a whole lot more really really bad stuff that takes up to much time and space to write. The schools and the inpatient hospitals that I went to were very very bad and scary and terrible and upsetting. I was FINALLY diagnosed with autism at 17 YEARS old because after ALL those years we finally found the right doctor and he said all those other reports were all a bunch of nonsense. 

If you have an autistic kid that doesn't talk please  make sure people know their not deaf or retarded and that they sometimes know that your there. You should NEVER force them to learn to talk because some will learn in there own time and others may never learn. There are so many kinds of computers out there now for us to talk with. Some kids may be able to talk but not be able to tell their needs or wants so those computers can help. 

Everybody should know AUTISM IS NOT A DISEASE it is a disorder and you CAN NOT CATCH AUTISM. Some people think we are fine and that there is nothing wrong with us just because we look normal and can act normal at times but then they get surprised and annoyed and upset and scared when we act a way that that they just don't understand just because our faces sometimes  don't look different. Then there are those people that blame the moms for our behavior just because they think we are spoiled and that we are trying to get our own way but that is NOT how it works with us. What you think of as getting our own way is us doing things you just DON'T understand for one example screaming. People think that just because we scream that we are brats so before you start blaming our moms or saying nasty stuff to our moms or to us or about us think about why we are acting like or doing the things we do uh there might be something wrong with us like uh maybe AUTISM. If you see a kid having a tantrum or spitting or yelling and screaming  and more they might be autistic so don't think they are spoiled brats and if you know they are autistic and they are having a melt down or screaming and more  it could be anything from the LIGHTS to TOUCH to SOUND and more but sometimes when we know what is causing us to act like that sometimes we can learn how to work around it. Some moms don't know why their kids are acting different than other kids so the last thing they need is people like that saying mean things to them or their kids. 

Most of us CAN make our own choices and we SHOULD be ALLOWED to and our moms SHOULD NOT be yelled at for letting us or told not to let us. If you think your kid is autistic please try to find a GOOD doctor or schools for autism. Don't forget the earlier your kid gets diagnosed the better off they will be when they get older. I hope this helps. If you have any questions please post them in a comment below. 

Sharing with you my world of autism 

By Michelle


  1. this was one of the most amazing stories I have ever read! thank you for sharing!

  2. Thanks for sharing your story, Michelle. You and your Mom are brave and wonderful people and I am glad you have each other! I have a 4 year old with high functioning autism. He was diagnosed and started therapy at 26 months old. We've come along way and we are all learning and growing through autism each day. Wishing you all the best.

  3. Thank you for sharing my story...I have an almost 15 yr old aspie and a 3 yr old non verbal classic ASD son. I truly appreciate all the older autistics speaking up for themselves and sharing their stories because it helps me to understand my kids a little bit better. i am sorry you had to go through all that...I'm glad my youngest son was born when he was because he has so many things to help him...10 yrs ago he would have been labled retarded and thrown in a "babysitting" school or institutionalized...Now we were able to get him an iPad and are working on getting him an AAC device (he currently has a loaner one)...we had no way of knowing how much he knew until the iPad and he goes to a great developmental school where he gets tons of therapies from wonderful people. I'm not looking forward to fighting with the school district like I've heard so many have to...we've kind of been spoiled by the school he's in. Do you have any kind of blog or fb page I could add to my list to follow? I would be interested in doing so because a lot of the people I follow are helpful for my high functioning son but not as much for seeing what goes on in the mind of my youngest