(As Promised, Linda)

I don't remember when I became aware of autism. I was young. Perhaps it was upon the release of the movie RainMan. Perhaps it was when Donahue had several autistic savants as guests. (One amazing sculptor sticks in my head.) I was a child then, and as a person who considered going into special education in my later school years, I was always at least mildly interested in Autism as a subject for study.

Then, one day, a young man with autism touched my heart, and I realized that it was not a subject for study, it was people. This boy was the son of a friend on an internet mailing list. The subject of the mailing list is my pet of choice, and this boy's story appeared on the list one day. The day Sean got his very own pet, he began to blossom, to grow in ways neither his parents nor his doctors and teachers ever thought possible for a child with his degree of autism. Through regular on-list updates of Sean's progress with Rocky as his sidekick, I was able to watch this child grow. He is now participating in regular elementary school classes with other children his own age; an astounding accomplishment! What a fascinating and heart-warming story, for which I will always feel blessed.

For Sean and his mother, I'd like to invite everyone here to share a story you might have about autism, to share any knowledge, dispell any misconceptions you might have, and I'd like to challenge each of you to learn something new about autism and share it with us all.

Please visit the Autism Society of America for more information about autism and about Autism Awareness Month!

I worked for three years with a boy with Asperger's Syndrome (a mild form of autism - vastly oversimplified, imagine a bright ten year old with the social sophistication of a two year old). He was not diagnosed until well into the third year, before that he had just been a "difficult" child to me. Diagnosis made an enormous difference - instead of dealing with (as I had thought) a child who WON'T interact appropriately with the other kids, I was dealing with a child who CAN'T. I had been using the warnings that one would expect to use with a ten year old "Settle down over there", the stern look, the warning tone of voice. When he was dealt the consequences of continuing an inappropriate behaviour, after what seemed to me ample warning, he would withdraw into hurt bewilderment. Once I was aware that he just wasn't "getting it", that he was unaware of all the cues that the other kids were picking up on, I changed my behaviour with him, and life became much better for all of us. He has a trained aide now, for part of the day, and his parents have received a lot of help in understanding his disorder, and ways to deal with it. It's hard to tell if he is a happier kid, but he is certainly much less of an abrasive force to the people around him, now that we understand why he is the way he is.

I have a friend who deals with Asbergers quite a bit. And, she really educated me about it.

She said that the people that we probably always thought were "weird" back in school probably had this. The ones that just didn't quite seem "right" - they were just undiagnosed.

One thing that she said is that those people tend to have incredible intelligence. In fact, you'll find a lot of top CEOs of companies and top-notch scientists have Asbergers. They have amazing intelligence but not the social skills. So, they will tend to be in jobs where the social skills are not as important to getting to the top as what they know. So, a science lab where a person doesn't interact with other people or a job that's on a level where they don't interact with others is where these people typically end up.

My friend taught me that autism is not just the "Rainman" type person that we see in the movies. Autism has a very broad range of types of people. Some of them may sit in a corner and repeatedly do an action. Others are on the other side of the spectrum and are really smart.

I have another friend that seems kinda "off" and I wonder if this might his problem. He works with computers and is really smart. But, when in social situations, he really doesn't function quite the same as everyone else - he's inappropriately loud, he says things that are not quite appropriate to the situation, etc.

I think there are a lot of undiagnosed people out there.

Thanks for starting this thread, by the way, L.

I don't know anyone afflicted with autism (and I think I now know everyone with everything else). What a perplexing disease! Or would you call it a disorder? Doesn't matter either or. Keep writing on it. I need to learn as it's something I am a complete dummy about!

I think you're right Linda, there is one boy in particular, when I look back now, I think "You know, I bet that's what he had.'

I think I would be inclined to call it an illness or disorder, it certainly isn't typhoid, however there are many drugs available on the market now such as Risperdal that can help. Quite often people (not just kids) who have autism will have other disorders such as bipolar depression that would need to be treated as well.

Every case is different, thereby an individual assessment is needed to sort out the most appropriate course of action to be taken.

My son is autistic and I prefer not to think of it as a disease. To me a disease is something you have - like typhoid - where as autism is more intrinsic to who you are. Adults with autism also often describe it in those terms - and don't say they want to be 'cured' - because that would to be to reject the people who they are.. I can't separate the autism from who my son is - it's not like there's a 'normal' boy under there waiting to be 'released' - so to speak. That's not to say that autism doesn't make his life - and mine - extremely difficult at times. I will spend the rest of my life trying to help him make sense of - and get along in - this crazy world!

Autism and Aspergers Syndrome can collectively be called 'Autism Spectrum Disorders' because they cover such a huge spectrum from the slightly 'eccentric' through to people who are profoundly disabled, by anyone's reckoning. Along that spectrum there are a whole lot of artists, musicians, scientists, writers et al that the world would be a poorer place without. When we start talking of 'cures' I get a little bit nervous about where we draw the line. I wouldn't mind a miracle pill that suddenly made my son be able to express himself more fluently in words...but it might be too high a price to pay if at the same time it took away his artistic talent and changed the essence of the wonderful boy that he is.

I also have an autistic son and an aspergis son, thankfully my daughter has not shown any traits (though I think there is some aspergis). The people who I would like to be made aware are the 'professionals' who are suppose to be there to aid and assist. I had numerous words with a director of the government centre over here (Western Australia) who I sarcastically quipped that he should open his door and see what is happening around him and what parents have to deal with. The person in charge of most of my side of Perth took a video home to watch and she said she did not realize a lot of things beforehand and showed some empathy towards our family.

Unfortunately due to the fact of my autistic son, my oldest son did not get the help from me as he should. He is now suffering due to this. Though I went time and time into the school and tried to explain it, they did not seem to understand nor change their strategies. Needless to say I was called numerous times up there for behaviour.

My autistic son (who is 13) has very little speech, has the IQ level that is normal if not higher, but an emotional level of a baby. In addition he was very violent, thus we could not get any aid or relief of care. Due to these splintered levels, he had to go to a normal school! Even the Autistic Association would not help so in the end I went to the papers to get help. Due to his violence, I had to make a decision to put him into care. There is no homes in this state for children, so that was another struggle with government authorities.

There is many many types of autism, unfortunately it has now been blanketed under one strategy. Awareness is a must, but awareness for the plight of the family and especially the damage to the siblings that suffer in so many areas is something that has to be known, for my son lives in his own world but is now happy with his world, but my other two children also live in a world of autism but the impact on them is so great.

They still get teased at school about having a brother like theirs. We could not go out for his tantrums would cause a crowd to gather and they would be so embarrassed. Their own problems are ignored. Everything revolves around the autistic child for the whole house has to somewhat cater to them, no noise, etc. They could not have friends over due to outbursts and other kids (but moreso the parents) thought it was contagious. Plus the holes in the walls, there is so many potplants and pictures you can hang to cover them. I knew of lady who was forced to live in a car because no-one would rent a house to her because of having an autistic child that also would take their frustration out on walls, etc. She finally got help after a long struggle. My son was not toilet trained to very late so that was another embarrassment to them. They also got physically attacked so much so that my oldest son still cannot handle seeing his brother and my daughter freezes in fear. Also they feel that all the attention goes on the autistic child. For as a parent I lived and breathed autism, searching for anything to help him.

Public awareness of autism and aspergis is great, but awareness to the siblings and the family is a must also.

Lord, Auszev, my heart goes out to you. It's true that the impact on the siblings is just ignored - I have a visually impaired son, and never once has any one of the many doctors, aides, etc ever asked "So how is your sister handling this?" It is just assumed that the "normal" child will be fine.
Is there any kind of support group there, for parents of autistic children? I have found, in my own trials and tribulations, that having someone to talk to who knows what it's like can be a real relief.
I sure hope things are getting better for you.

"Autism Awareness" must necessarily include the effects of Autism on family members! I'm so glad you posted, Auszev!

I found this website:
A4 - Autism Asbergers Advocacy Australia

There might be something there that could help you and your family out. I did read on that website that government advocacy programs, which spend a large sum each year, are still under scrutiny because of their practices for determining need. There are also a lot of good tips for parents on how to deal with school systems for appropriate attention for their children.

I can relate to what you and your children are feeling. My mother has epilepsy. While I never felt the lack of attention your children might feel, there is still a definite stigma attached to epilepsy, and there is a trauma as well. After my mother's first Grande Mal seizure, when I was 7, I was afraid any time I heard an ambulance in my neighborhood, and I would always go home from what ever friend's house I was at to make sure my mom was OK. And 7 year olds don't understand epilepsy. Neither do a lot of parents. There was a lot of, "Will I get it?" and "She has something wrong with her brain!"

Children are resiliant. At some point they will understand their childhoods better than they do now. In the meantime, if there is a way, I might suggest spending a day ever other week or so with just them, doing something they choose. It will be a chance for them to get one on one time with you, and for you to unwind. Sometimes something like that isn't possible, but if it can be worked out, I highly recommend it!

Thank you Lothruin and Agony for your kind comments. Now that my son does not live with us, my attention has been focused on the other two children. By their actions I did not realize how much affected they were and how much they starved for our attention. After some years they still have traits that young children have to get either negative or positive attention, even at 15. I remember the day after my son left, my elder son who was about 11/12, layed on the floor kicking and screaming. My husband did not understand and started to chastise him, but I told him to let him go, as he had years of frustration and anger to express for emotions were not allowed as this would upset my autistic son, and that was not nice. It was strange to hear the other two arguing like normal children at first! I do not have anything to do with Autistic associations now, for I am still very angry towards them and I am tired of fighting authorities (but those who we must to sustain my son in his current environment).

I was at a medical clinic some time ago, and saw a family similar to ours. The autistic boy was constantly talked to and the father was demanding everything from the older boy, and blowing him up in the same breath. For he was too slow, or why did he not think of that and help, etc. I then looked at the older sibling's posture and face. How angry and fed up he was. He was totally closed off.

I miss my son and guilty to have done what I did, but when I look at my other two children now, I know I made the right decision. But overall I do not believe that parents have to make that decision we had, which child to sacrifice to help the other, for their is little understanding and assistance given and getting less with cutbacks.

For those who work with aspergis and autistic children you are very special people (and there is not many of you). For those who know and/or teach their siblings, take a special moment for them and give them something extra that they may be missing at home or who may confused and lost in the world that they have to exist in (also behaving angily in a non-acceptable manner).

I have learnt one big lesson, never judge mothers who are struggling, for many autistic look normal. It was hard enough to cope in a supermarket, etc., without whispers and looks about how disgraceful the child is and all it needs is a good smack, etc. In all my years only one person asked if I needed help to pack my groceries into the trolley as I was trying to hold and contain my son screaming and kicking me. A few months ago I saw a woman in a similar situation, she was close to tears and I went up to her and offered my help, saying I have been there and gave her a reassuring smile. The look of thanks in her eyes was something I will remember.

Yes! I recognize and remember what a hard time my friend Irene had when her son was small...the stares, the rude comments. Now that Kase is older, he is a bright,charming young man and very quick to see things. I love to hear what he has to say - because his thought order is so abstract, his comments about things tend to be pared down without much nicety wasted - yet he is never rude. Just plain spoken.

Because of her intense frustration when our kids were younger, I have seen kase's mother emerge from being somebody living on the edge to a full time county liason between schools and mentally challenged students. I don't think I've ever told her how proud I am of the two of them. It happened so gradually over the years, it is hard to remember how things used to be, unless I dig out old photographs. What a pair they are!

Kstew, if you don't think you've ever told her how proud you are, maybe today is the day you should.

I, too, have a son with Autism. This week, a court here in Ontario ruled that the Ministry of Education must provide ABA/IBI therapy to all autistic children. Up until now, only those who were at the top of a government waiting list got it, or paid out of their own pocket, up to $60,000 per year. If your child was lucky enough to get ABA, he or she would only get it to age 6, when they would be removed from therapy, or the waiting list. (again, unless you were paying out of your own pocket). The Judge ruled that the arbitrary removal at age 6 was unconstitutional and was basically descriminatory. Of course, the government is appealling the decision. It says it doesn't want the courts to decide how and where it spends money. I wonder, how many of their children are disadvantaged in any way? How many of them have to give up time with their other kids, money for family vacations, or just time outside the home because of Autism? This is a recently elected government, one that said Autistic kids were mistreated before the election. Suddenly, their tune has changed. How very...political. Now we have to wait, wasting time while the appeals court rules, hopefully in our favour.(This is a government that gives free methadone to heroin addicts, and runs all the lotteries and slot machines!)

My 5 year old son is the apple of my eye. He is warm and loving, with the sweetest disposition. He attends school, with the help of an educational assistant. He has recently learned his alphabet and can count to 50. He spells his name, and his brother's, and loves everyone. His older brother is a real trooper, he puts up with alot. I know I expect too much of him, and I believe his school work is suffering because of the added burden of behaving, because he has an autistic brother. He doesn't want for anything, but I know he resents tolerating his brother's behaviour. Thankfully, things are getting better, slowly, day by day, and I hope that the future will bring as all happiness.

I only wish the government would realize that a little money spent now on my son, and others like him, would save so much money in the end. When we are gone, the burden of looking after an autistic adult who can't cope will fall on the government. Teaching autistic kids how to cope now will help us all later.