Autism: A gift of hope, courage and inspiration

By Jeanne Tan Te

It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady, Awit Dalusong

THE emails I received in response to my article about my child's autism were very encouraging.

It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady behind www.autismpinoy.com, Awit Dalusong:

"A few weeks before giving birth to Ethan, I was busy surfing the internet trying to update myself on the latest research on how to take care of a newborn. When, suddenly, I was directed to a website with these words on the front page, "God gives special children to special parents." Immediately, I turned off the computer and said, "Well, I don't think I want to be special."

As fate would have it, two and a half years later, I was once again in front of the computer, trying to figure out why my son lost his language and why he has failed to make eye contact with anybody including his mom and dad. It really started with an innocent question from a friend. She asked me, "How does Ethan call his Ate Colleen?" I answered, "He doesn't really call her anything. He had about 60+ words but after his second birthday, his words suddenly disappeared. I think it's because he's been watching too much TV." That night, I got a text message from her with these words, "not to alarm you or anything but please have Ethan checked right away because it's unusual for a child to lose his language according to my uncle who is a psychologist." I deleted her message right away. Fear had hit home, and it hit me hard.

The Autism Society's website confirmed any mother's worst nightmare. They enumerated fourteen behavioral signs and symptoms that may indicate autism. If the child manifested seven signs, then he needed to be diagnosed immediately. It was funny how my husband, Edward, and I desperately omitted some signs so Ethan wouldn't meet the seven signs or symptoms. I vividly recall saying, "I think he only has five signs, six max. Maybe he doesn't have autism after all." But, deep down, I knew the writing was on the wall. For the next several days, I never felt more scared, never felt more desperate and never thought I had so much tears to shed. We just knew he had autism. The diagnoses from the development pediatricians were mere formalities.

"Why my son?" was the question I asked myself everyday while I cried myself to sleep. Ethan crawled, lifted his head, sat, walked, uttered his first word exactly when he was supposed to, if not ahead of most kids his age. At eighteen months, he had uttered more words than his sister. His repertoire included the names of the secretaries in his Dad's office including complex words that a 3 year old may have difficulty pronouncing. He was a very happy boy with a constant smile plastered on his chubby little face. I fondly recall the Christmas before his second birthday, Ethan was dancing to the tune of the latest dance craze. He also gamely helped me show off his extraordinary verbal ability by perfectly identifying all the words in the flashcards. Everyone was really impressed with Ethan that I carried those flashcards wherever we went. Ethan (and I) enjoyed the applause and admiration. Then, out of the blue, autism entered our house, like a thief in the night it snatched my son's soul away from me. At two years old, our son virtually disappeared.

From a bubbly toddler, Ethan transformed into someone I barely know. He walked in circles, opted to play on his own, and the most devastating of all was that he seemed to have forgotten who his parents were. He had a blank look on his face all the time, our boy seemed lost, oblivious of our presence...

Edward had to kick me out of my depression and told me to "get to work because Ethan won't get well with you just sitting down." I called the Behavioral Management for Autistic Children (BMAC), Inc. (thank God for their website) and told them I wanted my son to undergo Applied Behavior Analysis (ABA) therapy ASAP.

Edward and I went to two developmental pediatricians and both confirmed that Ethan was indeed in the Autism Spectrum. We went back to the internet in search for hope. After a few days, we stumbled upon the website of the Autism Research Institute (ARI). ARI's theories on the biomedical approach in treating autism offered a new lease on life for our little boy. Incredulous as we were, our skepticism was still there. But it also offered us hope, and for a parent of a special kid, hope is all you could ask for. Prior to discovering the existence of BMAC, ABA therapy and the biomedical intervention of the Defeat Autism Now (DAN) movement, I felt so hopeless. I kept picturing Ethan ending up in an institution. My nightly prayer was for God to not let me lose patience in taking care of my boy for the rest of his life. In fact, one developmental pediatrician told us point blank, "Your son is autistic, and he'll forever be autistic." From that moment, we vowed to prove otherwise.

A month later, we went to Hongkong to meet with a DAN doctor who helped us get started with Ethan's biomedical and dietary intervention. If we were to help Ethan, Edward and I felt that we should address the behavioral and biomedical issues related to autism to ensure success. We felt we owed it to Ethan to explore every possible treatment available to help him recover. The DAN doctor told us that along with the ABA therapy, Ethan's biomedical interventions will put him on a faster track to recovery.

Ethan's first day of ABA was on June 28, 2004. I remember how frustrating the first session went. Ethan practically cried for the first two hours. I thought he could have cried longer had he not exhausted his energy from all that kicking, screaming, and running away. As the days rolled by, Ethan behaved better. For that alone, living with a child with autism seem to be more bearable.

However, Ethan's lack of expressive communication was still a very deep concern for everyone in the family (especially his grandparents). So, in the summer of 2005, I flew to Canada and the United States to attend a couple of workshops on Verbal Behavior spearheaded by Dr. Vince Carbone.

When I came back home, I was very eager to share what I learned from the workshops. I was ecstatic that the staff was excited to incorporate Verbal Behavior in Ethan's program. I have been blessed to work with a team that was very supportive in my endeavors to strengthen my son's program.

Ethan recently turned 4 years old. He knows all the uppercase and lowercase alphabets. He knows his numbers from 1- 20. He easily identifies all the shapes, colors, body parts and animal sounds. He has about 300+ receptive vocabulary. He knows the concept of opposites. His fine motor skills have dramatically improved to indicate that he now has the ability to concentrate on tasks. He feeds himself during mealtimes with great scooping control. Our greatest achievement by far is that Ethan can now sight read common words. But, Ethan is still a work in progress. He still has very limited expressive language. Most of his words are just approximations. His social skills need to be addressed. But there's no denying that he's had a major leap in his cognitive skills. A year and a half ago, he was a boy who didn't know any nursery song. Fast forward to today, Ethan can fill in words to some of his favorite songs. The point is, there is light at the end of the tunnel. The tunnel might be long and winding, but that light is a guide for me to persevere more for my son.

The year 2005 has been good to Ethan. Ethan got a coveted slot at International Montessori School, a school with a well-established inclusion program. The directress, Ms. Judith Gonzalez is very supportive with Ethan's dietary and biomedical intervention. She has been an answered prayer to a mother like me. The icing on the cake is that the school uses ABA techniques during Ethan's pull out sessions with his SPED teacher. Ethan's socialization skills practically blossomed overnight. He now enjoys being around other children. A far cry from several months ago when he opted to be left alone and showed no interest to be part of a group.

I am often asked what keeps me going despite the fact that my son has autism. The answer is simple, I have fully accepted Ethan's condition but I also haven't given up hope that I will recover him. Don't be afraid to tell people that your child has autism.

Upon confirming that Ethan was in the Autism Spectrum, I was afraid that my friends would pull away from me. Believe it or not, I never felt more loved and more understood by the people I cared about the most after I revealed Ethan's condition to them. Also, it's important to study. The best way to fight autism is to face it head on with courage, conviction and research. Nobody has all the answers to your child's condition. Parents are in the best position to decide what they feel is best for their children. I am currently doing some volunteer work for the Generation Rescue group. I also moderate an online support group for Filipino families affected by autism. Every week, I receive several emails from parents from here and abroad who wish to learn more about helping their children. Nothing excites me more than reading emails from parents inquiring about autism and recovery.

Yes, Ethan is a special child. He has made significant steps but he is still on the proverbial long road to recovery. Every now and then, my six year old daughter innocently assures me that "Ethan is on the road to recovery but there's just traffic, Mom." I still hope that Ethan will attend a good University, borrow my car to go on dates and get married someday. Edward still hopes that his little boy will be a world-class athlete. Yes, we still have high hopes for him and we will never give up until we find the solution.

They say that God gives special children to special people. We truly believe that parents of special children are some of the greatest caregivers in the world, the uber parents as they say. It's a tough honor, but it surely is worth living up to. Every child with autism deserves nothing less."

Disadvantaged kids learn skills, have fun at Cradle Beach camp

At Cradle Beach, fostering uncommon abilities
Disadvantaged kids learn skills, have fun at Cradle Beach camp
By Louise Continelli - News Staff ReporterUpdated: 08/19/07 8:48 AM

They may have cerebral palsy or autism or cystic fibrosis. But the disabled and disadvantaged kids who arrived home from Cradle Beach camp on Saturday morning had at least this in common: they all had fun.

And that’s what they did best at the Town of Evans camp.

Nine-year-old Casey Burnett of Buffalo said he wants “to be a fireman” — he was impressed by a camp visit by firefighters and a fire truck, complete with siren.
Shawna Lauby, 10, of Buffalo, noted the camp “was safe, respectful and responsible. And I loved swimming.”

Cradle Beach Executive Director Cara Stillman pointed out that “the diversity of the children was amazing. Some of them said they made friends with kids they wouldn’t have usually talked to.”

The camp also promoted unity through state-of-the-art equipment like the adaptive challenge obstacle course, designed for kids ages 6 through 16 who function at different physical and cognitive levels.

All campers were able to participate in an obstacle-course activity, regardless of level of disability.

But campers returned with more than memories of a good time.

Camp leaders, Stillman said, were committed to instilling values like integrity, honesty and responsibility in their young charges.

Some of the youngsters deal with epilepsy, motor difficulties, heart defects, Down syndrome, spina bifida, speech delays and neurological impairments. Cradle Beach is the only summer camp program in the country to integrate children with and without disabilities “as far as we know,” Stillman said.

The camp’s director said she is certain campers left with higher expections for their lives, greater “friendship skills,” sensitivity and compassion. The majority were better able to solve problems without fighting, and to resist negative peer pressure.

“They did well with resolving conflict,” Stillman added. They were also more comfortable with people of different cultural, racial and ethnic backgrounds.

“Kids get more responsible and independent,” she said.

Camp is not cheap. It costs $1,000 to send one child to Cradle Beach camp for 10 days. Of the approximately 800 kids who attended this summer, most came from families who can’t afford to pay this fee. This means Cradle Beach relied on the generosity of supporters, so children with special needs could enjoy nature, campfires, arts and crafts.

lcontinelli@buffnews.com

Understanding and Teaching Friendship Skills

Understanding and Teaching Friendship skills

Tony Attwood and Carol Gray

One of the central diagnostic criteria for Autistic Spectrum Disorders (ASD) is a failure to develop peer relationships and clinicians examine how the child conceptualises and demonstrates friendship skills. Normal childrens' conception of friendship changes over time and it is notable that children with autism and Asperger’s Syndrome often have an immature and unusual definition of friendship. The research literature on the concept of friendship indicates there are four levels between early childhood and adolescence. The four levels are summarised as follows:

Level 1: Approximately 3 to 6 years
The child recognises that games and activities cannot happen unless there is an element of turn taking but there is an egocentric or simple conceptualisation of friendship in terms of defining a friend as someone who gives you things or someone you play with. Friendship is based on proximity and physical attributes and when asked Why is _____ your friend? The typical response is He lives next door!

Level 2 : Approximately 6 to 9 years
There is an increasing understanding of the concepts of reciprocity and mutual rather than one-way assistance. The likes and dislikes of the other person are more likely to be considered with friendship based on how closely each friend matches their self interest, for example, in liking similar games. There is also a new awareness of the motives, thoughts and feelings of others. When asked Why is _____ your friend? the typical response is He lets me play the games I want to, Because she comes to my party and I go to hers or She's nice to me.

Level 3 : Approximately 9 to 13 years

The child is more aware of other peoples opinions of them and how their words and actions affect the feelings of others. They are more careful in what they say and do because it may be hurtful to someone. Friendship can be based on shared experience or common interests and helping becomes more valued than simply playing together. There is a greater selectivity in choosing friends, a gender split and a greater durability in the relationship. There is increased value placed on personal attributes such as trust, loyalty and keeping rather than breaking promises. When asked Why is _____ your friend, the typical response is He sticks up for me and helps me with my maths homework, She enjoys doing the things I like to do or I can talk to them and they listen.

Level 4 : Adolescence to adult

Peer group acceptance becomes more important than the opinions of parents, there is a greater depth and breadth of self disclosure, desire to be understood by friends and recognition that there are different types of friendship - from acquaintances to close friends with autonomous interdependence. When asked Why is _____ your friend, the typical response is or Because we think the same way about things.

When children with an ASD are asked What makes a good friend?, clinical experience suggests that a common response is a list almost exclusively of actions that a friend should not do, eg. bully or tease you, which indicate that the child has experienced a disproportionate level of negative experiences in their peer relationships. They know what a friend should not do but have little idea what they should do.

Social Play with friends
The social play of children with an ASD is often more immature than their peers and includes unusual characteristics such as having less motivation to seek friends, autocratic qualities and being less able to demonstrate the wide range of behaviours that we use as an index of friendship skills. The traditional school curriculum pays little attention to the development of friendship skills yet these skills are the foundation of abilities that are highly valued by adults in their professional and personal lives, namely having teamwork skills, the ability to manage conflict and having successful personal relationships. A recent study examined the perceived quality of life of high functioning adults with autism and Asperger=s Syndrome and only one variable, Ahours spent with friends@, was able to significantly predict the scores on any of the quality of life measures . These adults valued and desired friendships more than anything in their lives, yet few had the ability to maintain acquaintances, let alone friends. As children we were never directly tutored in friendship skills, so how do we start teaching someone who appears to lack the intuitive ability we take for granted?

The starting point is an assessment of the friendship skills the child demonstrates and the skills that are conspicuously absent. We have standardised tests to measure cognitive, linguistic and movement skills but at present we do not have standardised assessment instruments for friendship skills that can be applied to children with an ASD. However, a review of the research literature on the range of social behaviours used as an index of friendship skills with ordinary children can produce a primitive checklist of friendship skills for children with Asperger Syndrome. The key social behaviours to be examined are as follows:

Entry Skills: How the child joins a group of children and the welcome they provide for children who want to be included in their activity.

Assistance: Recognising when and how to provide assistance as well as seeking assistance from others.

Compliments: Providing compliments at appropriate times and knowing how to respond to a friend's compliment.

Criticism: Knowing when criticism is appropriate and inappropriate, how it is given and the ability to tolerate criticism.

Accepting Suggestions: Incorporating the ideas of others in the activity.

Reciprocity and Sharing: An equitable distribution of conversation, direction and resources.
Conflict Resolution: Managing disagreement with compromise, and recognising the opinions of others. Knowing not to respond with aggression or immature mechanisms.

Monitoring and Listening: Regularly observing the other person to monitor their contribution to the activity and body language. Their own body language indicating interest in the other person.
Empathy: Recognising when appropriate comments and actions are required in response to the other person=s circumstances and the positive and negative feelings of others.

Avoiding and Ending: The appropriate behaviour and comments to maintain solitude or end the interaction.

The next stage is to use behavioural and cognitive strategies to maintain and improve friendship skills. If the skills outlined above occur, then it is essential that such behaviour is recognised and rewarded. The authors would add that the praise should also be directed at the other child, as they need encouragement to maintain their friendship, especially as such children are often not among the most popular children in the class or neighbourhood. It is also essential that the child=s social play is monitored by an adult to identify when the cues for specific friendship skills occur but the child has not recognised them or is unsure how to respond. The child=s attention is drawn to a specific cue or opportunity and verbal prompts and instruction given as to what to do. This is an application of the traditional behavioural techniques of task analysis, prompting, shaping and reward. Children with an ASD are unusual in that they can be taught what to do in a given situation, but they may not understand why the action or comment is appropriate. They need to learn the theory as well as the practice. Conventional programs to encourage friendship skills with ordinary children make assumptions that may not be applicable to children with an ASD who have significant problems with Theory of Mind Skills, Affected Relatedness, Central Coherence and Executive Function. However, Social Stories can be used to assist the child to acquire the necessary cognitive mechanisms. The following is an example of a social story for a grade one child who needs to learn about the concept of assistance in friendship. It is designed to understand what 'help' is

Sometimes Children Help Me

Sometimes children help me. They do this to be friendly.

Yesterday, I missed three math problems. Amy put her arm around me and said, Okay, Juanita She was trying to help me feel better.

On my first day of school, Billy showed me my desk. That was helpful.

Children have helped me in other ways. Here is my list:

I will try to say, Thank you! when children help me.

How I Can Help Children in My Classroom

My name is Juanita. Sometimes, children help me. Being helpful is a friendly thing to do. Many children like to be helped. I can learn to help other children.

Sometimes, children will ask for help. Someone may ask,"Do you know what day it is today" or "Which page are we on?" or maybe something else.

Answering that question is helpful. If I know the answer, I can answer their question. If I do not know the answer, I may try to help that child find the answer.

Sometimes, a child will move and look all around, either under their desk, in their desk, around their desk. They may be looking for something. I may help. I may say, "Can I help you find something?"

There are other ways I can help. This is my list of ways I can help other children:

Children like to be helped.

Other techniques can be used to encourage friendship skills such as a friendship diary, matching individuals and support groups.

For younger children, a friendship diary can be used to record occasions when the child demonstrated friendship abilities and other children were particularly friendly towards the child. It is interesting that one of the criteria ordinary children use for defining what makes a good friend is someone who has similar interests. However, the special interests of the child with an ASD may not be interesting or popular with their peers.
One option is to identify other children who have the same interest and introduce the two children to each other.
An example is a child with Asperger=s Syndrome who has a special interest in ants, a solitary pursuit for him as no other of his acquaintances at school shared his enthusiasm and knowledge of this topic. However, by chance, another local child who also has Asperger=s Syndrome, was also interested in ants. When they were introduced a genuine friendship occurred with joint expeditions to observe and collect ants and the sharing of information and resources on these insects. It was notable that each child=s friendship skills with other children appeared hesitant and contrived, yet when the two met, their natural friendship skills were far more fluent and spontaneous. This technique can be facilitated by local parent support groups having a registry of children and their interests, pen pal registries, special interest clubs and Internet chat lines. An extension of personal matching is the development of local support groups run by adolescents and young adults with Aspergers Syndrome. These groups hold regular meetings and excursions to destinations that may not be valued by their ordinary peers, such as museums and transport facilities. These groups provide a social life outside school, and the opportunity to meet someone who shares the same experiences and values, the basis of many friendships for adultsOne of the issues raised during social skills workshops for young adults with an ASD is recognising when someone appears to be friendly but may actually be taking advantage of their social naivety, and how to identify and respond to the different types of personality. Tuition may be required in identifying hidden motives, seeking a second opinion and how to manage situations of potential abuse. It can also be necessary to teach the strategies of maintaining friendship, coping with grief when the friendship ends and overtures of friendship that are not reciprocated. The authors have also noted that children with Asperger=s Syndrome appear to lack an ability to perceive and describe the personality characteristics of others and themselves. When asked "What sort of a person is _____?" their responses are predominantly descriptions of physical attributes such as height or what a person does, eg. a teacher. What is missing is a wide lexicon to describe the different types of character. When personality characteristics are nominated, a common response is "nice and kind", and synonymous words to this one characteristic. The children appear to have a one dimensional approach to characterisations. Other children can quickly "read" a person's character and adapt their behaviour accordingly. They know which children to avoid and are more proficient in choosing who complements their own personality. To teach such skills in young children with Asperger's Syndrome the authors advocate using the popular Mr. Men stories by Roger Hargreaves. They describe a range of personality types such as Mr. Grumpy and Mr. Nosey and Little Miss Chatterbox..
Another activity is encouraging the child to choose an animal that represents someone's personality. Older children can use adaptations of literature studies to identify the indications of personality type and how to respond to such people. It is important to help the child understand their personality and to recognise the type of person they are likely to get along with and who might become their friend

Dispelling Autism Myths: Why Curation Isn't The Answer

Every now and then, I run across someone that hasn't gotten the word that autism is a spectrum condition. Although science has pretty much shown conclusively that autism comes in varying flavors, from the most disconnected, nonverbal, helpless autistic all the way up to people that are socially inept, obsessive, but generally capable of living life normally, there are people that refuse to accept this.


These people refuse to accept that there is anything to autism other than disability, helpessness, dependence, and pain in those who care for them. This would be a contemporary view twenty years ago, but it isn't now. Unfortunately, there are well-known "experts" in the autism community that continue to promote and spread the myth that autism is nothing but people who don't communicate and who can never live without a full-time caretaker. Bernard Rimland is one of these dinosaurs. Despite the fact that he wrote the foreword for Temple Grandin's first book, acknowledging that she was autistic, he continues to insist that people that can talk, live independently, and get college degrees cannot be autistic. Temple Grandin, in case you do not know, travels around the world speaking at autism conferences, lives independently, and has a doctoral degree.

These people invariably find fault with what I have written here on a number of points. First, they almost always deny that I am autistic. It is standard procedure for a person arguing with an autistic person about matters of autism to question whether that person is really autistic (apparently as a means of reducing his credibility). I have gotten this so much that it is almost like waiting for "the other shoe to drop" once someone disagrees with me. If I finally convince them that I am what I claim to be, I usually hear that I am an exception. Temple Grandin's an exception. Donna Williams is an exception. All of the other people like me that have web pages are exceptions. So very many exceptions running around there are! I have made the acquaintance, online and offline, of hundreds of "exceptions."

The truth is that there are more "exceptions" than these people know. While they can handily deny our existence when it suits them, we're out here, and we're just as much a part of the autism equation as any low-functioning autistic. While they want to define autism only as a horrible, child-stealing enemy that must be eradicated (which leads them to ignore or marginalize autistics that can communicate), the fact is that people like me are no less a part of what autism is than the individual they are personally trying to cure. And invariably, there is always one person that defines what "autism" means for them.

The people that desperately need autism to be this horrible foe, rather than a condition that one can live and be happy with, even be proud of, are very resistant to the idea that there are a lot of "exceptions" like me around. If they took a unified view of autism, including ALL autistics, not just the ones that meet their outdated and self-serving definition, they would have to admit that people like me might have something valuable to offer them, in terms of our opinions and experiences. They don't want to do that, because people like me overwhelmingly do not support the "Cure Autism Now" type agenda. Given that just about every autistic adult is steadfastly opposed to Cure Autism Now and similar groups, the anti-autism people must keep us marginalized and irrelevant, or else they would have to admit that there is something wrong with their agenda when nearly all of the autistics that can communicate oppose the groups that are trying to eradicate us out of "compassion."

One person I argued with recently suggested that no one is out to cure people like me; the cure is needed, she said, for people like her son, who are nowhere near as high-functioning as am I. That would be a reasonable excuse if there were a cure that could be applied only to adult autistics, who could choose for themselves not to take the cure. However, there is no such cure, and given what neuroscience has revealed about the structural brain abnormalities that come with autism, it is abundantly clear that there is not going to be a cure that will help someone who is already autistic (which is NOT to say that any autistic person, low functioning or otherwise, is hopeless, or that they should be left in a state of neglect. Please be perfectly clear that when I say there is no cure, I mean that there is nothing that will make an autistic person into a normal one. In no way am I suggesting that there should be no attempts to improve the lives and the functioning level of any autistic child. I'll get more specific about that later in this article).

There are over a billion neurons in a human brain, and they are connected to each other with an intricacy that boggles, no pun intended, the mind. Curing an autistic person would mean making the brain structures that have developed differently become more normal. It would mean thickening the cerebral cortex in the posterior portion of the brain. It would mean trimming millions of "extra" neurons in the gray matter of the cerebrum-- and this would have to happen without disturbing the intricate balance of neurons that results in human consciousness. The corpus callosum, the amygdala, the cerebellum, and several other brain structures that are typically underformed compared to an NT (neurologically typical; in other words, normal) brain of the same age would have to have the proper amount of neuronal tissue added... again, while maintaining the delicate balance that results in consciousness. This is something that would be much, much harder than fixing spinal cord injuries, like the one that paralyzed actor Christopher Reeve, and while progress is being made for injuries like that, it is much different thing entirely to reconfigure an entire human brain. It would be akin to taking a chimpanzee's brain and reworking it so that the chimp thinks and acts like a human-- all without killing the chimp!

This is a very hard thing for many parents of autistic kids to accept. They want their kids to be normal, and they want to believe... they want to believe that there is a cure. They think that with enough vitamins, ABA, Floor-Time, secretin, GF-CF, chelation, et cetera, they can make their kid normal. Those things may have their uses, but they're not going to make an autistic into an NT. Regardless, there are quasi-experts going around speaking at conferences, all but claiming that they can fix an autistic kid (but it'll cost ya!). I ask that you do some research into neuroscientific discoveries about autism and brain construction before believing any of these claims of curation. These are physical differences in the way neurons are laid out in the brain... nothing is going to change that layout. That is what a real cure for autism would require.

What this means is that a "cure" for autism is more likely to take the form of autism prevention. The most likely scenario for this is to develop a DNA test for a predisposition toward autism, and to have parents selectively abort fetuses that show the genetic markers for autism. I have a big, big problem with that. I have the genetic markers for autism. People with AS (Asperger's Syndrome) have the genetic markers for autism too, as is proven by the coexistence of autistic and AS children in monozygotic siblings (identical twins, triplets, et cetera), which share exactly the same genetic code. I might not exist if my mother's amniotic fluid had been tested for genetic markers for autism when she was pregnant with me, and if some well-intentioned doctor told her horror stories of what autism could do to her life. A lot of wonderful people, some that have contributed immensely to society, may never have existed if there was a genetic test for autism.

So, when I argue against a cure, I am really arguing two points, corresponding with the two paragraphs above. First, I am arguing against trying to force an autistic kid to act normally through behavioral intervention, because that's not actually curing him. No matter how the kid is trained to act, the brain in his head will be thinking autistic thoughts. Forcing him to act like an NT when he is not an NT is a very stressful way for him to live, and it usually causes a host of problems once the child grows up. I get to see autistic adults that had this stuff inflicted upon them as kids all the time, and a lot of them end up attempting or committing suicide when they realize that they are still the defective people that their parents and their tutors had told them they were if they were not normal. While some normality acts learned in this way can fool normal people into thinking the kid is now normal, the person who has to carry on the act is never fooled. Ask any one of my kind that has had to live behind this sort of mask... ask if they ever thought they were normal now. We know we are not normal... it takes way too much conscious effort and hard work to pull off the act of being normal for us ever to think that. It would be like someone asking a normal person to act like an autistic person, mimicing autistic movements, speech patterns, interests, et cetera, for the rest of your life, with no breaks, ever. This is a horribly cruel thing to do to someone, even if the intentions are good.

The other point I am arguing is that someone who is already developed and who is unable to live independently is not going to be cured. That person will always be autistic. Now, I must quickly add that this does NOT mean that the person will always be helpless and requiring of care. If the goal is to help the person learn to take care of himself, communicate his needs, or live independently, I would say those are wonderful, laudable, reasonable goals. Now, for someone that thinks that autism equals helplessness, this next point is hard to accept. You can help the autistic person to do those things without curing the autism. I can't emphasize that enough, because this is the one point that so many people refuse to understand. They have to let go of the incorrect definition of autism as a condition that completely prevents learning and development of skills that will allow someone to live independently. With that definition, the only way to help an autistic person to be independent is to eliminate (cure) the autism, which leads them to latch onto the "cure at any cost" mentality that ends up doing more damage to their kid than they can ever imagine. The fact that there are _many_ autistics that have life skills, that can communicate, that can live like real people, should be proof that you do NOT need to cure the autism to give the person a chance at life. Curing the autism is not reasonable or possible, but that does not mean that there is no hope.

Unfortunately, some people are still so wedded to the idea that autism equals horrible disability that they want to wipe autism out entirely. The aforementioned woman who told me that no one was out to cure people like me eventually admitted that she wanted to wipe autism off the face of the earth. The truth is that this is what all of the CAN people really want. They hate autism; to them, it is the name of a stealthy foe that took away the kid they wanted and replaced it with one they did not want. Few would ever admit not wanting their kid, but this is really the way it is. The dissonance this creates is a source of tremendous guilt in these parents, and that causes them to take often ridiculously dangerous chances in the name of defeating this foe that has caused them so much pain. This is a very personal battle for them... they see autism as a demon that stole their dreams of a normal child, and they want to kill that demon at any cost.

That attitude is understandable, but horribly counterproductive. The "war" mentality that this attitude causes is very stressful to the kid, and stress is a terrible thing in the life of any autistic. It causes a lot of the autistic behaviors to get worse, impedes learning, and is very unpleasant to the autistic. If the parents would call off the war and recognize that autistic kids CAN be educated, they CAN develop and mature, they CAN go to college and get a job and live like a real person, maybe they would not be so driven to defeat the autism. That is the kind of CAN that I like... the one that says that no one is hopeless. I, and people like me, are proof that autistics can grow up and be able to live as adults. You can work within the autism to help the autistic kid grow and mature, but you have to quit looking for a complete cure that is going to suddenly make things the way you wish they were. Ultimately, the feverish search for a cure, and the refusal to accept anything but complete defeat of the autism demon, are a form of denial. It's denial that this is what your child really is, that autism is what he is more than what he has. For the sake of the child, they have to drop the attitude that autism is some kind of parasitic demon that fights to destroy the life of the child and (by proxy) his parents.

Autism is not at all like a bacterium that invades a body, and which must be killed for there to be any improvement in the condition. That is obviously how many people see autism, though; they talk of how their child "became" autistic, as if that is when he caught the bug that causes autism, and they talk of a cure, as if it were some kind of antibiotic that will kill the germs. The cure for which they seek is something like penicillin, in the bacteria analogy. This is a very flawed way to look at autism, one that is borne of ignorance. To someone that does not understand how deep the neurological differences run, it seems plausible that there is something, some enzyme, some hormone, some nutrient that is missing, some simple thing that, once discovered, will get rid of the autism, like water on a fire.

Autism is what someone is, not what someone has. It is not a disease, with a specific external cause and a specific remedy. It is a condition that is permanent. It is also a condition that does not automatically mean that the person will live a life of disability. The goal should be to help the autistic person develop into the best adult he can be, not to cure the autism. The former works with the child, building him up; the latter works against the child, tearing him down. Doing the former means dropping the grudge against autism and accepting that it is not a thief that stole your child... it is simply a name for a very different kind of child, one that, at birth, has just as much potential as any other child. Remember that it is not your child that has the grudge against autism-- it is simply the way he is; he has no concept of autism or normality. It is the parent that has the grudge, and that can make her fail to realize that the war on autism is something she wants, not something the child wants or needs. It is very hard for such a parent to accept that the war on autism is not in the best interest of the child; she is so blinded by her hate of this autism demon that she is absolutely convinced that fighting that demon that has abducted her child, no matter how long the odds, no matter what the collateral damage may be, is the right thing to do for her child. Living with the demon is unfathomable to them. They cannot believe that the child can ever grow as a person and mature with that demon still attached.

The bottom line is that it is very possible for autistic children to grow into self-sufficient autistic adults. Much of the time, the emphasis the parents have is on curation of the autism, and that does not work; the autism always remains. That approach is the one that was tried while most of the non-self-sufficient autistic adults were growing up. It is silly to keep butting one's head against an immovable rock; trying to cure the autism is akin to that. Instead of trying to destroy the rock with the head-butting, why not work with the rock and just go around it, leaving it in place? That approach works (and is in fact the approach used by the newer and most effective autism therapies you may read about), and if the focus of research was on learning new ways to parent autistic kids, rather than curing autism, it would work much more often.

A child's brain is far from being fully developed at birth. All children, autistic or normal, are born nonverbal, helpless, and unable to do the slightest thing to take care of themselves. While the basic structure of the brain, which determines (among other things) whether a child is autistic or not, is already complete at birth, the majority of the neural connections, the ones that dictate the ability to communicate or think, have not been formed yet. The brain is simply too complex to be described entirely in DNA, so the neurodevelopment process is guided by patterns of stimulation in the existing neurons in the brain. If the child is normal, there are no real barriers to development; the child thinks and looks and learns almost as if by osmosis. As he does, the new neurons that are formed as his brain grows are placed according to how the child uses his brain. If he thinks in a logical manner, more neurons are added to the part of the brain that does the logical thinking. If he hears sounds, the part of the brain that processes sound is built. When the child begins to realize that some vocal sounds have meanings, the part of the brain that processes language begins to develop. (maybe because they believe that autistics are emotionless and cannot form bonds with anyone, With an autistic child, there are often barriers that prevent these things from happening.

Sensory issues may present such a jumble of stimuli that the autistic infant cannot make sense of any of the things he sees or hears. He can't form a concept of what the world is, and that means he can't think and wonder and be curious about it. If he hears language as a jumble of disconnected sounds, the part of his brain that processes language is never stimulated. His brain's new neurons are not placed in a manner that enhances function, but instead in a random way that reflects the manner in which his faulty senses perceive the world. So while his parents are trying various stressful therapies to rid the child of the "disease" of autism, or worse, are not trying to bond with, engage, stimulate, or educate their child because someone irresponsibly told them that the child was a lost cause, or because they just don't know what to do with this unusual child), his brain is rapidly developing in a random, haphazard manner that does nothing to enhance his level of functioning in the future.

The primary task, in the first few years of an autistic's life, should be to engage the child's brain, to get the sensory net to develop enough to begin presenting a coherent view of the world, so that the child can begin to form a concept of the world. He'll still be autistic, but he might just surprise you with what he is able to accomplish, if you can get his brain engaged early enough. That's what I mean by working with the autism, not trying to defeat it.

I am not suggesting that working within the autism to raise the child is easy; it's not. Raising a normal child is not easy, and raising an autistic child is harder than that... sometimes much, much harder. I wish it were not so, but with the limited knowledge we have of autism, it is likely to be this way into the foreseeable future. I'm also not suggesting that my way is a guarantee that any given autistic person will grow into a self-sufficient adult. There are no guarantees in life. I am telling you that you stand the best chance at having your child grow into a self-sufficient autistic adult if that was your goal from the beginning.

It is pretty obvious that what we know about raising autistic children is minimal indeed compared to what we know about raising normal children. Even so, what is known about raising autistic kids now is a huge improvement over the state of affairs only ten years ago, and the prognosis has improved accordingly. Right now, the biggest thrust in autism, and in autism research, is to find a cure. That's just more head-butting against that rock, isn't it? Imagine how much we could learn about helping autistic kids to become functional autistic adults if that (helping autistic kids become functional autistic adults) was the focus of the research, and of the parents whose demands and money drive that research.

Some people want to insist that almost all autistic kids will grow into adults that will never be self-sufficient, and because of that, autism must be cured. Even if it were true that most autistic kids will never grow into self-sufficient adults, and it is not, it still would not mean that curing the autism is the best thing to do. Maybe the thing to do would be to find a way to help autistic kids grow into self-sufficient adults... from a research perspective as well as from a parental perspective. Is that really so hard to understand?

Faces of Autism - Part III

It was once a rare diagnosis, but now, Autism is more common than Multiple Sclerosis or childhood Cancer. With one in 150 children being diagnosed with Autism, there's a very heated debate about what's causing the increase. The reality is no one really knows for sure. It's a very controversial issue and there are dozens of different theories.

"I used to think my son's spirit was taken from him, but I actually think it's still there, it's just hidden away, it's just locked in a door that we are trying really hard to break down,"

says Shelly Cowgill, of her son Jonah. The door closed on 6-year-old Jonah Cowgill's life just a few months shy of his second birthday. Shelly says, "He was my first, earliest crawler, first to sit up, he did every milestone on time, he walked on time. He had about a 40-word vocabulary and then it just, kind of went away."

In a matter of a week, Jonah's world fell apart. "He stopped talking, he starting walking around in circles, I couldn't get him to make eye contact with me. He would make strange movements with his eyes and we knew something was wrong."

Luckily, Jonah's pediatrician acknowledged and diagnosed the Autism quickly, but the answers and explanations the Cowgill's would get from doctors in the coming years, weren't good enough for them. Shelly says, "You get to that point, okay, I've done everything mainstream medicine has asked me to do; and so as a mom, as a parent, you start looking into other things."

The Cowgill's are now in a fight to get back the son they once knew. It's turned into almost a full-time job for Jonah's mom. "Some of the things we're doing with our son, now in treating his Autism, I think we really feel is probably the medicine of the future for treating kids, at least with the type of Autism that Jonah has," says Shelly.

The causes of the dramatic rise in Autism cases is at the center of much debate, but many believe genetics play some role. Dr. Pam Hanson from Franciscan Skemp says, "We know there's a genetic propensity to Autism and that, if one child has it, there's a higher chance another child in the family will have it. We also know that there's probably some abnormalities within the structure of the brain."

But, with Jonah's type of Autism, the Cowgill's are convinced, it's something more than just genetics. A so-called perfect storm for a catastrophe. Shelly says, "I think genetics kind of loads the gun, but I think environment kind of pulls the trigger. For someone, like Jonah, who was fine for the first 18-20 months of his life, and for it to just disappear like that, you kind of have to wonder, okay, what happened here, something happened here, something went wrong."

One of the most controversial arguments is whether the mercury-based preservative and known toxin, Thimerosal, which used to be used in childhood vaccines, is responsible for the increase in Autism cases. Dr. Hanson says, "I think Thimerosal, which has been taken out of vaccines for young kids, has been looked at so thoroughly, that everyone's pretty much debunked that as a cause."

Shelly says, "I'm not anti-vaccination by any sense of the word, but I'm kind of thinking, we need to be watching what preservatives we're putting in vaccinations and I think we need to take a close look at the vaccination schedule."

Dr. Hanson says, "Are other vaccines involved? It's still an ongoing study to look at those."

Tests on Jonah have found detectable levels of several metals in his body, including mercury and lead. Both of the Cowgill's are dentists, who work with industrial chemicals, often, so is there a connection there? They've now turned to bio-medical therapies, such as Chelation, to treat Jonah's Autism. It's a process that pulls the metals out of his body. Jonah's dad, Terry, says, "I'm the skeptic, she'll tell me a theory and I'm a skeptic, but after you see some from separate doctors, separate labs, and the same results, there's something there."

Another of the potential factors being studied is diet. Some people believe removing gluten and casein proteins from their child's food intake has helped them improve, although, it didn't do much for Jonah. Regardless, the Cowgill's are not giving up their fight. Shelly says, "Some people might think that's crazy. I can live with that, the one thing I can't live with is not doing everything I can to help my son."

Dr. Hanson says, "I think when you have a disorder that's not curable that conventional therapies don't work miracles for, then I think looking at alternative therapies, that work, sometimes just as well as our medical therapies, is understandable."

Shelly says, "No matter how he turns out, we will absolutely love him and be fine with, however, whatever happens in the end, but it's still, I feel, as his mother, it's my job, our job to make sure that we help him reach his potential."

It is true Autism is recognized and diagnosed more, but most experts also agree, that alone doesn't account for the huge increase in the number of cases.

Faces Of Autism - Part II

If you lined up 10 Autistic kids in a room, no two would be alike. Every Autistic child is different. Two or three in every 10,000 children have a high-functioning form of Autism, called Asperger's Syndrome. They usually have major difficulties in social situations and have unusual interests and behaviors. A La Crosse woman shares her first-hand experience growing up with Asperger's.

"I always had this sense that I was different from the other kids. I had thoughts and feelings, I suspected, that none of my peers thought the way I did," says 23-year-old Nicole Baumgartner. Nicole has lived her entire life on the outside looking in. From as early as she can remember, something just wasn't right. "I could sense there was something different about me. I didn't know what it was, I didn't have a name for it. Most of the time, I felt like a freak or I imagined, maybe, I was from another planet or something."

Nicole's first memory of feeling alienated and different from the other kids was on the playground at preschool. "Looking down from this climbing structure at everyone else who was in my class, sitting there watching them with this oversized baby doll in my arms, just watching. I'd physically separate myself to perhaps mimic the mental separation I felt." The loneliness and feelings of isolation continued into elementary school, but it would still be years before her disorder was diagnosed. "I did like to play a lot by myself with a small group of friends. I'd sit on a tree stump and daydream in elementary school during recess." By high school, it had become easier for Nicole to hide in the shadows. Her survival strategy, make other kids her textbook. I kind of became a nature show host, almost, I'd observe others and just stay out of it and see what they did. They were animals to be observed, in a way, to learn, okay, what does a so-called normal person do in this situation. I kind of styled myself an outcast, an outsider, I was really into heavy metal and I'd hang out with other like-minded people. I channeled myself, almost completely, into academics, because I knew that's where I could do well, it's where I felt safe."

After years of slipping through the cracks, doctors finally diagnosed Nicole with Asperger's Syndrome, her sophomore year of high school. "I did some research on my own on the Internet, and books, and the more I read, the more I was like, 'oh yeah, I did that when I was younger, I did that, I still do that.' I experience a lot of mixed senses. I can feel music, as if it was like a physical touch. A lot of people with Asperger's, I've read, tend to be very frank and say exactly what they're thinking, whether it's socially acceptable or not. People will say something to me and if I like the sound of a particular phrase or something, I'll repeat it out loud after them and they'll say, 'I just said that' and I'll be like, 'yeah, but I want to hear it from my mouth.'"

Nicole is now using her disability to help others in the same or similar shoes. After graduating from Viterbo, in December, she landed a job working with other Autistic kids as a classroom assistant at Chileda. She calls herself a voice for the voiceless. "I'll notice one of the students doing a particular behavior and I'll be like, 'yeah, I would do that, too', if I didn't feel like I had to constrain myself to so-called normality. When I finally, kind of, came out of the closet, so to speak, with my disorder, a lot of people said, 'well, I didn't know that, I wouldn't have guessed it' and I said 'that's because I'm very good at pretending to be normal.' There's a lot more of us, so-to-speak, than you may think, you might even work or live next to someone who perhaps has Asperger's. Be sensitive and understand that people with disabilities are people too."

Unlike other forms of Autism, Asperger's is usually not diagnosed until adulthood, because of a lack of standardized criteria to diagnose it. It was a social worker at Nicole's high school who first suspected Nicole had it.

Faces Of Autism - Part I

The numbers are eye-opening. One in 150 kids are now being diagnosed with Autism, with the disorder affecting four times more boys than girls. This so-called explosion of new cases is not only puzzling, it has many very concerned.

The 1988 movie Rainman was, for many of us, our first look inside the life of a person with Autism. It brought a lot of attention to a certain type of the disorder, but unfortunately, also created some misconceptions. Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, often accompanied by extreme behavioral challenges.

t's a Spring afternoon at the Reuteman house in La Crosse and 8-year-old Sam is on the move. Just looking at Sam, you probably wouldn't notice anything unusual, but hidden behind the smile and laughter is a world only Sam knows. The first of four kids, Sam came into the world showing almost immediately he was a fighter. Sam's mom, Callie, says, "Colicky, they labeled him colicky right away, very spitty, when we fed him, he wouldn't keep anything down."

Looking back now, Sam's parents believe that was one of the first signs something was wrong. Sam's dad, Paul, says, "They originally labeled or diagnosed it as just colic and said he'll grow out of it and not to worry about it."

Sam did eventually grow out of it, but he still struggled. He had a tough time expressing what he wanted and when his speech started developing, it became very repetitive. Callie says, "You hear a lot about regression in kids. Sam always was delayed, he didn't actually roll until he was 8 months old. The doctor kept saying he's a big baby, then he didn't crawl until he was 11 1/2 months."

The thought of Autism did cross the Reuteman's mind in those early years, but it was never a real consideration. Paul says, "There were times, when I had thought about it, but yet, we were continually reinforced by other people, don't worry about it, right now, he's just delayed, that's common."

It wasn't until Sam was about 4 years old that doctors finally diagnosed him with Autism Spectrum Disorder. Most kids are diagnosed by age 3. Paul says, "Some of the medical professionals were a little bit hesitant to label him, just because they were afraid of that permanent label on his record." The diagnosis, as strange as it sounds, was actually a relief. The Reuteman's finally knew what was wrong with Sam and now they could do something about it. Paul says, "It's a very, very difficult pill to swallow the first time you hear your son or daughter may be Autistic, but it's so important to get the diagnosis, so you can move on and carry on with the appropriate therapies."

Diane Hietpas, Director of Special Education at Chileda, says, "You may see some sensory issues, where kids are processing sensory information a little bit differently, so they may be very sensitive to sounds and they may want to cover their ears. Socially, they prefer to play alone and they do very, very repetitive things. Play with Lego's, but build the same tower every time."

Sam still has many of the traits and behaviors associated with Autism, but with therapy, he's made incredible progress over the years. He's now a second-grader at Cathedral school in La Crosse, learning right along with the other kids his age. Sam's teacher Amy Gleason says, "It's teamwork, without the teamwork, without the parents, without all the other teachers, art teacher, music teacher, without us all working together, my students, it wouldn't work."

Sam is more like an 8-year-old boy, now, than the Reuteman's every thought he could be, and they hope more people will take time to understand Sam's world. "We don't necessarily know where he's going to be and I don't think society knows where he's going to be, either, and I think that's going to be a huge issue in the next 10-15 years," says Paul.

Callie says, "Life goes on, we've learned so much from Sam and our kids have learned so much from Sam, and I absolutely love every ounce of him and what he does for us, and I feel we've been dealt this hand, and you know what, you go with it."

Early detection and intervention is key with Autism. It's much easier for the brain to adapt to differences in the early stages of development. Sam works with a therapist a couple of times a week, for a few hours at a time, which is crucial for him to continue to control some of those behaviors associated with his Autism. But, one of the big issues is also cost. These therapies are very, very expensive and insurance companies typically don't cover them.