I am too busy caring for my daughter with autism who will be 18 very soon to call in to the show. But I want to say two things:
First, our kids grow up. I wish more educators and families would think about that sooner. The Arc of Oregon has a great program to help parents prepare for their kids with disabilities after they (the parents are gone.)
Second, not to plug my own work, but I have helped put together a booklet all about the services available to people with autism in Oregon. Not education services, but Human Services. You can access it on the web, but it's not easy. Go to oregon.gov/DHS/dd/ Under "provider tools" click on "manuals" scroll down to the bottom of the page to "reports and other documents" Then click on AUTISM; AN INTRODUCTION FOR PARENTS AND A GUIDE TO OREGON'S HUMAN SERVICES SYSTEM. It's a pdf document that you can download for free. It will get you started on how to find help.

The direct URL is
http://ore...m_2005.pdf

For children who tend to run away and safety is a concerns try out Connector Program- by Project PACE:http://www.paceplace.org/. They work with families and children with autism. Connector is a novel idea and in its infancy and I have been using it with my child who is a runner. It is certaintly worth a try. Supriya

What dismays me is that there is so little discussion of the elephant in the room - that being the appauling services provided by those charged with that task - i.e., early intervention and school districts. Early Intervention and school districts hire lawyers that will assure that they are able to provide as little as possible, and get away with it legally (because they have comparatively unlimited funds, provided by taxpayers).

Although scientifically validated studies have been done, demonstrating applied behavior analysis as the most effective method of improving, and in many cases, eliminating the diagnosis of autism - public educators have yet to utilize it. Instead, they opt for a less rigorous appearance of incorporating behavioral principals, but nix the accountability of taking valid and thorough data.

Additionally, staff that spends the most time with students with autism are largely untrained. There are generally two options provided by school districts: mainstreaming and sellef-contained classrooms. In general, people prefer the idea of mainstreaming, but as it is implemented in Oregon, a more accurate term would be "dumping", as students are placed in classrooms with untrained aides (if they get one) and inadequate supports.

It would be interesting to find out how many people have opted out of the system because of these issues (I am one of them).

I have also wondered about the issue of how school staff working with autistic students are trained. My children attend a public high school where there are several students with high-functioning autism spectrum disorders. The autistic students are mainstreamed, but have support staff who work with them closely, IEP's, etc.

For the most part this has worked out well. For example, there is one autistic young man who both of my children enjoy attending classes with. They like the way that he thinks and the way that he sees the world. He expresses himself very differently, and as creative kids, they like that about him. He seems to be doing well in the school--as do nearly all of the other autistic children who are in the school.

Conversely, however, there is another autistic young man in the same grade whose behavior really seems inappropriate and strange. What I mean is this: he follows girls inside and outside the school and frightens them with his behavior and the things he says to them, which are often sexually graphic. He also has written a number of stories and poems in class to read aloud which are incredibly graphically violent (about shooting, stabbing, cutting, burning, dismembering etc).

I first learned about his behavior when he began harassing and following my daughter. She talked to us about it, and on our advice, she then talked with her advisor at the school, who then called a conference with the principal, the autistic student's staff aide, and the school psychologist. They called my daughter into the conference. The school psychologist was terrible to her---he said that she had to be making things up, and that it was all because he was autistic---that she must be singling him out for mistreatment. They did eventually speak to the autistic student about appropriate behavior, but he has continued to follow and frighten girls at the school, and to act out sexually in other ways at the school which are too graphic for me to relate here, as well as continued to write and read weird and violent stories in class. Recently, he took a particular interest in one of my daughter's friends, a very quiet and shy girl a few years younger than him, and was following her and harassing her so much she finally broke down sobbing in her class one day. She had been afraid to tell anyone what was happening...after my daughter's experience with the school psychologist it is not hard to see why that might be.

I wasn't upset with the school psychologist for his reaction, although it was not fair for him to automatically assume that my daughter, who is a good student and good citizen, was lying. My take on his reaction was that he is a strong advocate for special-needs kids, and I am certain he has witnessed far too many incidents where special-needs kids are treated poorly by other kids. So I get it. But my kids are in their 4th year at this school, and I have heard story after story about what this young man is doing. In this very small school, everyone is aware of his behavior. And it seems that no one at the school is willing to address it.

I want to be CRYSTAL CLEAR here---I do NOT ascribe his behavior to autism. His behavior in no way is representative of the other autistic children at the school. Rather, I ascribe the school's lack of appropriate response to his behavior to a lack of training or understanding on their part. I think the biggest tragedy is that not only are a lot of young girls being subjected to behavior that frightens them but also that he isn't getting the response or direction he needs so that whatever is going on with him can be addressed. What a disservice to this young guy. It just seems like a tragedy all the way around.

My son with Asperger's is 18 today. He was diagnosed at age 4 and received lots of valuable support until about 5th grade. As he began Middle School and High School services deteriorated significantly. He had a great 9th grade year and then had a melt down. He only attended 10th and 11th grade for a few months and no private tutoring was offered. All counseling has been paid for by us. The Bend/La Pine Autism Specialists have changed every year for the past 4 years, not a good thing for children who are so fearful of change. After complaining to the School District We now meet with the District Special Ed Director but have gone without an IEP for over a year. He now has a private tutor which is helpful. While teachers and individuals working with Special Ed kids in the District have been wonderful and done all they can, the lack of knowledge of both Autism and the Laws regarding special education in our District are sadly lacking. I have downloaded the Guide mentioned by Blue Nile. Thank you. Why was I never offered any resources like this from our school administrators or Autism Specialists? My experience has been that our District at least, is very pporly equipped to handle older children on the Autism Spectrum. Any suggestions?

I remember learning about the risk for mental/physical diseases and disabilities increase when the age of a pregnant woman increases. Does Oregon have a disproportionate amount of older women getting pregnant compared to the rest of the country and might this be why we have a higher rate of autism?

I am a nurse who works with pregnant women and also the mother of an adopted daughter with autism. To me there is no statistical link between age of mom and incidence of autism. However, the idea that there is a higher incidence in the NW is interesting to me, because that matches the pattern for SIDS (sudden infant death syndrome). The rates of SIDS are lowest as you go east in the US and south, and higher as you go west and north, so the highest SIDS rates are in the Pacific Northwest. That may be of some interesting future research.

Frankly, I do not see autism as a problem. People on the ASD have helped to develop computers and the IPOD. If there were not people on the planet with autism our day-to-day quality of life would be significantly lower (I think Einstein and Bill Gates on are the spectrum).

The problem, as I see it, is not the people with autism, it's all the other people around them. How do we appreciate, respect, love, and live with people with autism? How can be best bring everyone's talents into play to making this a better world? (not just people with autism, everyone!). Why can't be better appreciate all the beautiful variances that people have?

I'm not pollyanna about this! I do live with a daughter with autism and there are challenges to this because she needs lots of structure and order, which I have had to develop. She is a concrete thinker, and I am very abstract. There are many challenges! But there are also many many gifts! She has superb sense of humor, and she makes me laugh every day. She loves squirrels and is kind to animals. She actually loves animals more than people because, as she explains, people can be very mean. And she is so right! What is so terrible or so wrong about this? Why is this considered a problem? I just don't get it.

To you or not, scientifically speaking there is a link between chromosomal disorders and age of mothers.

http://www...121518.htm

There is also an easy to read graphic showing a substantial statistical increase in any chromosomal disorder as a womans age of pregnancy increases

http://www.../bp094.cfm

I am wondering about the over diagnosis of autism in our state. Right now it is a "hot" diagnosis. I am a speech language pathologist in an early intervention program and I find that many children who are diagnosed as having ASD are often misdiagnosed. I am not denying that there is a rise in autism, but I do feel that if children are having delays, many people are quick to give the label of autism.

I have an 8-yr-old daughter with autism; she was diagnosed at 18 months. We had great in-home (free) services in Texas and then she was enrolled at 3 yrs old into the public school system down there. We moved to Salem when my daughter was 4, so she was evaluated by Willamette Educational Services. I was extremely satisfied with Sophie's pre-school experiences: the ratio of teachers to students, the level of care and expertise, etc.

Transitioning to the public school system from the preschool system, for children with disabilities, can be a horrendous experience. Although my daughter Sophie could read and write before entering kindergarten, the experience was so traumatic for her that, at the end of the school year, she had almost recovered her skills to the level they were prior to entering public school.

It's taken me 2 years to get a one-on-one assistant for my daughter in the classroom; she's had episodes of violent behavior at school which was finally the thing that got the adminitration's attention. Sophie's doing much better now but the experience has taken years off my life.

One of the most frustrating aspects of this struggle is that the schools don't necessarily have helpful information for parents. The best resource I've found for parents of kids transitioning to public school is the Oregon Parent Training and Information Center, tel. 888-891-6784. They are a wonderful sounding board, resource clearinghouse, and advocate for parents of children with disabilities.

Thanks for letting me have my say!

With a son on the spectrum who has moved from moderate/severe autism to just extra sensitive and quirky I think the very best thing that could happen for kids on the spectrum is for their to be school choice.
Public school is too big, too bright, too loud, too many kids and just adding more pull outs or an aide doesn't help a person settle into themselves and come to grips with their own situation. Public schools give the most services to the most disruptive students and it creates those kids and makes a community for them that doesn't help them.
Private placements by parents in private school leave the family completely on their own. They get NO services from their local school so many families are kept virtual prisoners in their public school because they can't affford anything else.
Small small schools offer a place to actually grow. The large public schools may push some kids over the edge into autism because they can't handle the chaos.
Free choice in education where parents and students can find their best place is the best thing we can do for the individual, family and society.

I am the mother of a 12 yr. old boy with Asperger's Syndrome. The support we have received through our public school has been invaluable - they have helped to train teachers in how to work with our son including putting an aide in his classroom when necessary. Having a team approach that includes educators is critical to helping kids like this who otherwise find that school is a "mine field" of difficulties: bullying and taunting in particular are alive and well in middle schools today. If the teachers understand then they can help communicate to students and even other parents about autism and its many challenges.

My son is now 21 years old and when we first tried to have him diagnosed - 2 doctors refused to "label" him and this made it much harder to access services, etc. He was finally diagnosed at age 19!! He has a twin brother and at 2 1/2 years old the differences were very apparent. He is a great "kid" but he is also an adult who needs a lot of support and care on an ongoing basis. Dona Starkey@ dnmstarkey@comcast.net

I also have a 21-year-old son with an Asperger's syndrome diagnosis. He didn't receive an autism spectrum label until he was over 5, probably because he was and is very verbal. What I have always told him is that he is "differently-abled", not "disabled". He has always had an incredible memory for many things, including people's names (we have relied on this many times), a love of music couple with perfect pitch and a beautiful singing voice, and mathematical reasoning skills that carried him through calculus in high school. He is also a kind and compassionate person who is enthused about life and inspires others. I would hope that parents are always encouraged to look for the gifts that their children have and bring to the world, as this will help them overcome the challenges they will face.

Are there any definitive ways to know autism rates are increasing? How do we know that the numbers aren't increasing due to increased awareness and diagnosis?

Sorry about the delay. I was driving and then had to create an account. Please speak to the strain on familys with more severe cases of autism. I have heard statistics of 80% divorce rates. As a parent of a child with autism (Lake Oswego Middle School), I can speak to the non-stop stress a family goes through. We can not think about getting through the week, let alone what things are going to be like after our daughter reaches adulthood. By more severe, I mean holes in the wall, take a swing at the teacher severe.

As young children with high functioning autism and asperger's disorder enter and progress through the school system and join the mainstream classroom, what, in addition to working with the parents, do regular classroom teachers with little previous training or experience working with children with autism need to do to prepare to work most effectively with these students?

How is Oregon doing in preparing both special educators and regular education teachers to work with this special needs population?

I have a 4-year old son with PDD on the autism spectrum. I wanted to stress the importance of addressing sensory issues when working with children with autism. Attending to the child's sensory needs is key in helping the child function in the world. My son is a student at Portland's School of Autism (www.schoolofautism.com), which is a sensory immersion preschool and kindergarten. My son has made huge progress since starting at the school last spring. He has many sensory issues (most in regards to food and tactile issues, such as brushing teeth or having his hair washed). He is an extremely bright and active child, and working on his sensory issues has been the single most useful treatment he's received (followed closely by speech therapy).

Sorry if this repeats. I didn't see it post.

I strongly agree with the tie in between understanding sensory issues and teaching a child with autism. Yet, I have also seen this to be lacking in traditional special education training. It has led to many missteps in our childs education. It is also one of the key contributors to strain on the household, as the family life revolves around managing it.

I am a child & adolescent psychiatrist and program chair of the Oregon Council of Child & Adoelscent Psychiatry (OCCAP). We are sponsoring a CME program at Doernbecher/OHSU tomorrow (Saturday Feb 2) entitled "Approachin Autisctic Spectrum Disorders: What Do We Know?" The speaker is a national expert on Autism. Her name is Dr. Treadwell-Deering MD, chief of psychiatry at Texas Childrens Hospital and co-director of their autism clinic. This should be an excellent medical education opportunity for pediatricians, family physicians, psychiatrists and allied health professionals. Families would be welcome as well. You may register at the event which starts at 8am on Doernbecher's 11th Floor, the Vey Conference Center. Cost is $60 for OCCAP members and $100 for non-OCCAP members.

I'd like to push the thinking about what happens in adulthood BEFORE the age of 16. Families and educators can think about long term quality of life in early childhood. Supporting parents in healthy family life early (being able to go to the grocery store, have dinner together, enjoy life together) will enable children to experience these and learn from them early. Right now, our services are primarily classroom based from the age of 3. Children are taught to behave and respond in classroom environments while they continue having extreme difficulty at home.

The core issues of autism are skills that children learn before the age of 12 months in typical development (e.g., social engagement, joint attention). Caregivers are primary at that age, no one will deny that fact. Caregivers CAN be the primary support for people with autism in daily life and most often want to be.

Currently, parents are taught to be more passive observers of their children with autism, while they receive services through schools or other interventions that remove parents as primary people in their lives.

Yes, the earlier that better for families to be supported to best guide their children in the early developmental skills they lost... but this can occur at any age and see huge life changing improvements.

www.barbaraavilaconsulting.com
I use Relationship Development Intervention in my work with families.

-Barbara

My name is Vickie, and I live in Maine. My son is l7 and high function autistic. I have discovered that he and my daughter had a high intollerance to food dyes, which created the uncontrollable behaviour. I removed those from his diet, and began a protocol of detoxification of the heavy metals which he had built up in his system. Using a simple herb celantro, (if you don't have a lot of money to go to alternative doctors) can pull many heavy metal toxins out of a body. The more metals that are removed, the higher levels of normalicy seem to occure. There are many other things I have him on, Alpha Lipodic Acid, Chorella, and more. The other coller was right about high level probiotics and enzymens and liquid vitamins. The damage done to the digestive system caused by the heavy metals, makes it difficult for these children to digest any nutrients from their foods.
My son is now l7, he has his drivers lis. He is the happiest and most well grounded person I know. I have been blessed by him, even though it has been a ongoing learning event. His capacity to love, and understand, and forgive, is amazing.

My son was diagnosed with Aspergers at age 4. He is now 15. He currently attends Lifeworks in Tigard, where they help teenagers deal with a variety of issues as well as school classes. He has been attending Lifeworks since 7th grade. He has had behavior issues througout grade school, but was able to attend regular school K-5. In 6th grade, the first year of middle school, the wheels came off, and my wife and I knew we had to get more help. My son has been on a variety of medications since about 5. This year has been really difficult, he is currently at the hospital (third time in a year) while our doctors change his medications. He wants to come home, but we have to get him to a residential center next week so he can get more help. He is showing signs of Bipolar illness also, which they are trying to treat also. We visit him every night at the hospital, and it is emotionally very difficult to leave him, but we are having such trouble at home with him that we feel this is necessary. The effect of having a special needs child on the family cannot hardly be understood by someone without such a child. But we both love him very much and remain hopefull that we can help him to get to where he can have a good life where he can live with his limitations. The adolescent years with an asperger child are very difficult for everyone involved, but is managebl