Who are the real experts on autism?  Child Psychiatrists/Psychologists? Special-Needs Teachers? National speakers? Behavioral Specialists? Therapeutic Support Specialists?

As a parent raising a child with autism, I am always looking for solutions that will help improve my son’s mental and physical condition, lifestyle and educational development.  I have worked with various agencies, organizations, psychiatrists, psychologists, doctors and so on.  However, I have to say the most helpful and useful information, for me, always seems to come from other parents raising children similar to mine.

In my opinion, these parents are the “real autism experts”.  They are the ones who live with autism 24/7, have been through various “trial and error” efforts when it comes to medications, therapies, schools, public activities, etc.

Don’t get me wrong, there are some in the medical professions that can offer helpful information and solutions; however, in my experience, they don’t live with a child on the spectrum and don’t really understand what it is families living with an individual on the autism spectrum experience.  If they don’t understand what you experience, how can they know that their advice applies to the whole situation?   Each family in this situation represents a unique  set of circumstances that the “book answer” does not always apply.  In my experience, some of the most useful information comes from those who “have lived it”.

I am not saying to “ditch” your current medical consultants or cancel your any autism services you are receiving, I am saying that the solutions you are looking can possibly come from a parent, someone like you; someone who does not have a degree or license.    It is common to think that only professionals in the industry can help, and then a sense of guilt may come about if you don’t strive to make an appointment with every professional or expert is out there.

I speak to many parents who are currently raising children on the spectrum and ones that now have grown adults on the spectrum.  Unfortunately, I hear one particular story from every parent I speak to, this is the one that no one wants to talk about.  The story of how the parents are disrespected and mistreated by the very individuals and organizations that are supposed to be helping them and their child.  A lot of us parents are treated as though we are the “biggest idiots” and that we cannot possibly know what is best for our children since we do not have a “formal education” when it comes to Autism.    We should sit with our “little hands in our little laps”, smile and nod, and do exactly as we are told by the “experts”.  In addition, we are not to “complain” or “question” anything; if we do we are “biting the hand that feeds”.  What a bunch of crap.  I wish I was making this up; the countless stories of how many of us are disrespected by schools, clinicians, agencies and other organizations is absolutely disgusting.

Please remember, the real autism experts are the parents.  They live, eat, breath and experience autism, not just Monday – Friday, but 7 days a week, 24 hours a day; holidays, sick days, etc.  We are given children that we are not “trained” or formally “educated” about; yet we are the ones responsible for their health, lifestyle, education and medical care.  Parents of individuals on the autism spectrum deserve far more respect and support then they currently receive, they are certainly the “real autism experts”.

Today is “World Autism Day” which aims to spread awareness of Autism, as well as educational and fundraising events.  Children with autism seem to be the main focus, however I think it should focus on all individuals on the autism spectrum.  And again, like any other annual event, please remember that “World Autism Day” isn’t just one day for us parents and caregivers of individuals with autism; we and the individuals we care for live with this everyday.

My son is now 12 and is attending a private autism school; fortunately things have improved for us in terms of his behavior, mood and vocabulary.  Recently, he has been much happier and extremely affectionate.  Yet, he still has his setbacks; he still cannot read, write or use a keyboard.   Therefore, thinking about what is going to become of my son in the future is a little worrisome for both my husband and I.

Someone I have recently starting working has given me a glimpse of hope.  I am a web developer and one of my clients is diagnosed with Asperger’s Syndrome.   For 23 years, he has owned a hauling and lawn business; which I find very encouraging.  I usually hear of individuals with disabilities leading successful lives and obtaining employment, but rarely hear of a special needs individual running their own business.   When I work with this particular individual, I notice similar traits that my son also exhibits; awkwardness with meeting and communicating with new people as well as exhibiting unique habits and quirks.  In addition, I also see someone who tries very hard and gets frustrated when they can’t easily understand or learn something new like other people can.  I also see a very caring person who wants to show others he cares, but has to be careful not scare people away.

I think the concept of World Autism Day is a great idea, but again, children on the autism spectrum seem to be the main focus; please remember that autism does not “fade away” when these individuals grow up.  Many individuals struggle with this everyday and are in need of help and support.  Anyone can make life a little better for someone on the autism spectrum and it doesn’t just have to be on World Autism Day.  However, if we can all use this day to spread awareness and acceptance, I think it is a day well worth spent.

Just recently, someone asked me what the autism rates in Pennsylvania were and I told them I had no idea, but would look into it and get back with them.  Unfortunately, the information I found was very discouraging.  According to an article by the Associated Press, Pennsylvania autism rates are 1 in 75; the national average was 1 in 88.  However, according to a new article by medicalnewstoday.com, the CDC is now reporting 1 in 50 kids in the U.S. have autism.  But wait, it gets even better; according to vaxtruth.org, this “1 in 50″ is actually “1 in 29″ and that “…the CDC failed to make it clear that the numbers they reported on March 29, 2012 were from data collected in 2008. The numbers are four years old. ”

So, my question is “Why?”  If we have all of this “autism awareness” and “autism research and education”, in which various individuals, organizations and businesses are dumping money into, why are more and more children being diagnosed with Autism?  Is it an issue of incorrect diagnosis or over-diagnosis like we saw with ADHD in the mid-nineties?  Is it really an “environmental issue”, “family dynamic issue” or, dare I say it, the vaccinations?

The “vaccination debate” seems to really cause an uproar similar to that of gun control.  My son had 25 vaccinations in the first year of his life.  25 vaccinations?  Wow, I think my mom said I had 4 in my first year.  Does anyone think maybe, just maybe, 25 shots is a “bit much” for an 8-15 lb baby in their first year?  Again, the vaccination theory, is just my opinion, not trying to force my opinion on anyone else.

So, why is it that the autism rate is climbing?  Any thoughts?  What am I missing, or, what am I not seeing as the “cause” of autism that others see?

A couple of months ago I watched a documentary called “Pink Ribbons, Inc.”, it was released in 2012 and directed by Lea Pool.  The film explores how the Pink Ribbons campaign has metamorphosed from an organization “raising money to find a cure” to “raising money to make money”.  In addition, it is also been used by many corporations to increase their own “brand” and therefore, increase company profits.  Does this sound harsh?  Maybe, but when you watch the film, the statistics and observations by doctors, cancer survivors, current cancer patients and various industry experts will astound you.  The film makes you stop and think about our culture and how we have the ability to take  anything and brand it, package it, sell it and use it to increase profits.

As I watched this film, (and I know people are going to viciously attack me, like they did when I wrote blog #3) I could not help but think “this is where Autism is going, Autism is the new brand.”  It is the new “cause” to stand behind and profit off of.  Before you stop reading, just consider what I see, specifically as a parent with an autistic child.   Autism which is defined as “a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior“(The American Psychiatric Association’s Diagnostic and Statistical Manual-IV), now has it’s own logo – a multicolored puzzle piece(yes, I know the logo of this blog incorporates this), as well as it’s own products: autism t-shirts, autism toys, books on autism, social skills and meltdown strategy workbooks, consulting and training services, autism workshops/conferences, autism magazines, etc.

Please don’t get me wrong, I appreciate any individual or organization that wants to promote awareness and education about Autism, as well as, raising funds to help organizations who help families with Autism.  However, I cannot help but see the same “red flags” that the Pink Ribbons, Inc. documentary discusses, Autism is going down the same “branding path” as the Pink campaign has.  Every time I open up Facebook, I see some organization or group selling some sort of autism product or service.  As a matter of fact, there is now a local autism group that is now accepting local businesses to participate in a “corporate partnership” program – expand your business advertising by advocating for autism.

Being a business owner, I actually considered participating, however, my thoughts went back to the “Pink Ribbons, Inc.” film and I asked myself, “Am I really fighting for a cure?  Am I really helping to promote autism awareness?  Or am I just paying into a program that results in exposure for my company?”  Am I becoming part of something bigger – making money off of a disorder or the new “dream cause?” Is autism the new “dream cause”?  Unfortunately, I am beginning to think that it may.

This is a “dirty little secret” that no one wants to discuss, people will more than likely say that now I am “biting the hand that feeds” or that I am being “ungrateful” for individuals and organizations that raise funding for Autism research.  Again, no that is not the case, what I find utterly appalling is when corporations use causes to further their own profits.  This is nothing new and the Pink Ribbons, Inc. film clearly documents this fact.  Yes, Autism and Breast Cancer is like comparing apples to oranges, however, the culture of the “raising funds for a cure” is exactly the same.  The logo, the organizations, the products, the workshops, etc.  Once the “money-making machine” begins, there is no stopping it, Pink has been raising money to “find a cure” since 1982, billions of dollars have been raised – is there a cure?  No.  The medical professionals in the film clearly state, there is no “real progress” that has been made to establish a cure.  The same thing is going to happen with Autism – there will never be a “cure” for autism.  It makes too much money for people to lose – that is the ugly truth.

However, with this said, and people who know me will account for this, I do fight for my child in terms of access to appropriate treatment and school services, as well as advocacy for overall equality.  I do not “celebrate” autism or like it, what I do like is when my son is happy and content.  I like it when he tries to play or communicate with another child and am proud when he is the most well behaved child in a room full of  non-autistic/special needs children.   I like the fact that autism awareness is growing and the patience and kindness that others show us when we are out and about in our local community.

Children with autism should be accepted and have access to opportunities like everyone else.  Autism, the disorder, should not be accepted; once it is accepted and celebrated the fight to find a cure will weaken.   Anger fuels fires to fight something; complacency leads to acceptance which leads to nothing.  When you donate for any autism cause, please make sure you research the organization you are donating to, find out exactly where your money is going.  Here is a great place to start: http://www.csmonitor.com/Business/Guide-to-Giving/2010/1122/How-to-check-out-a-charity.

Finding a cure for autism should not be giving up on or thought of as “politically incorrect”.  Autism prevents many children from being able to communicate and/or control behaviors, emotions and prevent academic progress.  This is not being negative, I am simply stating facts.  My son struggles with this issues not because of genetics or how we raised him, but because of autism.  He will not be driving at the age of 16, he will not be taking the PSATs, and he will, more than likely, not be attending college at the age of 18.  Will he drive and go to college one day?  Maybe, maybe not.  That is the reality of his disorder, are there other autistic kids that do accomplish these tasks,?  Yes, but for my son, it is more than likely that he will not hit these milestones anytime soon.   A parent cannot empower a disability or disorder out of a child, but that parent can empower themselves to advocate and fight for that child’s rights for services and fair treatment.

Exactly one month ago, Christian started going to a new school, we had him transferred from a public school to a private Autism school, and I am very pleased to say he is doing extremely well.  He attended a public school, for six years,  therefore, we were a little concerned about his transition to a new school. We assumed that his first two weeks would be very stressful and we were prepared for massive”meltdowns” at school and at home.  Surprisingly, that has not happened and he has been extremely happy and has seemed to settle into his new classroom very nicely. He looks forward to getting on the bus with “Ms. Jackie” and often requests “go to school”.

The reason we requested the school transfer was due to his minimal academic progress in the public school setting (he was in an Autism Support classroom with a teacher and 3 classroom aides).  Our concerns have to do with his inability to read and write.  Christian is now 12 and obviously, we feel,  time is not on our side.  We feel that we need a stronger and more challenging academic approach to get Christian where he needs to be by the time he is 18.  Christian’s chances of attending college are extremely slim (even though I think it is always good to be hopeful and positive, we do have to be realistic with the facts – he is also diagnosed with Mental Retardation and is IQ is 55), we would like to now focus on him obtaining basic skills, especially reading skills, since we would like him to learn keyboarding skills.  With keyboarding skills, he still has some chance of obtaining some type of employment and we are working with the school to incorporate keyboarding skills.  Keyboarding skill is also very plausible for him to obtain since he is always on the computer, he is able to maneuver around the Internet with the mouse and knows how to watch DVDs on the computer, but if there is something specific he wants to watch on YouTube, ex: The Wiggles, I have to type that in the search box for him.

Sometimes a change-up in an academic setting, with new staff, new ideas, different activities, etc., may result in improvements.   However, I think everything is based on trial and error, and you don’t know what will work unless you try it.  So far, we are very pleased with Christian’s transition and classroom performance.

The new school provides him with more “one-on-one” time with a classroom teacher, a behavior specialist and he gets more hours a week of speech and occupational therapy.  He is also in a smaller sized classroom in which there are only five students in his class.   He has access to a sensory room, which has a large swing, mats, books, toys, large bean bag chairs, and another room that is more of a “quiet” room – it’s a smaller room with only been bag chairs, in which they turn out the lights and play the child’s favorite music.  Christian apparently loves both of these rooms.

There is a downside, which is that he does not have any inclusion with non-autistic children.  I believe inclusion is very important because it gives him an opportunity to try and communicate with other children who in-turn can possibly help him learn general social and communications skills.  He is verbal, so he does have a tendency to repeat what he hears, which has its pros and cons.

His entire school only consist of 15 children, who are all on the spectrum.  So, I am currently working to get him signed up for the COSMIC after school program, in our local school district, which is run by the YWCA in Hanover.  The COSMIC Project is geared to assist youth in meeting state standards for core academic subjects by providing students with academic enrichment activities.  They offer homework assistance, recreational activities as well as bullying prevention programs.

After three weeks at his new school, he is pointing to more things and telling us what they are, for example, he will point to photos and tell us who is in the photo as well as pointing characters out in a movie and telling us their name.  Hopefully, his skills will continue to improve and the behaviors will continue to decrease.

Until next time…

As a parent of an autistic child, one of the issues within the autism community that really “sets me off”, that again no one wants to talk about, is the issue of public schools having children with Autism arrested when they suffer from a meltdown.  “Meltdowns” can include, screaming, biting, scratching, throwing objects, breaking objects and worse, they may try to harm others.  The safety of ALL children should be the priority in these types of situations, therefore, the first thing to do is to isolate the child, who is having the meltdown, to an area where no other children are present and where the child cannot easily exit.  The second thing to do is to call the parents and have them come to the school to remove the child.  Parents should have this “crisis plan” or “meltdown strategy” in their IEP to have some “guarantee” that their child will not be arrested.  If a public school, will not agree to this nor will they “guarantee” they won’t call the police, then there is a “security” need/issue that the school cannot adequately address, therefore, parents should request a transfer to a school that can provide adequate “security” for your child.

I call this a “security” issue because unapproved transportation of a child from a school, to an unknown location, to me is a security issue.  I need to know who is handling my child and who he is around, for his safety and others.  I now have a guarantee from my son’s current school that they will NOT call the police on him and that he will not be transported anywhere that I do not approve.  My child does not belong in a police station, no matter how bad his meltdown may be.  He needs to be with the proper teachers and behavioral specialists that can help him de-escalate his behavior; the police would only escalate his behavior.

A friend of mine, who has a son diagnosed as PDD-NOS (atypical autism), was attending a public school and was arrested, placed in handcuffs and charged with disorderly conduct.  He was 12 years old at the time.  His teacher had taken the class on an “outing” to a local restaurant, inside the restaurant her son had a meltdown, he became extremely loud and irritable.  The restaurant owner called the police, I assume he probably not familiar with autism and was worried about the safety of his other customers.  I completely understand this; however, the teacher did nothing to help deescalate the problem.  The teacher stood there and watched as the police came in and arrested him.  He was put in the back of a police car and his mother was not notified until after he was at the police station and the school suspended him for three days.  Really?   Am I the only one that sees a problem with this?

That child was the teacher’s responsibility, she was the one who took the class on the outing.  It was her responsibility to isolate the child, whether taking him outside or taking him in the restroom, again to prevent any harm to anyone else and then call the parents.  If the parents could not retrieve the child; then that teacher should have contacted her school and had another teacher or staff member come to the restaurant and appropriately escort the child back to school and then wait for the parent to to come to the school.  Now, this child, who is diagnosed with Asperger’s Syndrome, now has a disorderly conduct charge on his record until he is 18.   Really?  So if the child wants to get a job before he is 18 – will he be able to?  How did the police help this matter?  How did this help the child?  Why didn’t the teacher step in and say “No, this child does not need assistance by the police, he is diagnosed with Asperger’s Syndrome, we are waiting for additional staff to help me transport him back to the school and wait for his parents?”

If a police officer came in and handcuffed my child, I know for a fact, that experience would fuel my child’s anger even more; he would probably have become more agitated because of the way the handcuffs would feel against his skin and having his arms forced behind his back.  Many autistic kids are overly sensitive to certain objects or certain fabrics against their skin as well as being physically restricted.

So, if public schools cannot handle children with autism, why are they there?  Could it be that the public schools do not want to hand over the money they get for special needs kids to another school district?

Below are just some examples of children with autism being arrested at public schools:

http://www.care2.com/causes/eleven-year-old-autistic-boy-arrested.html

http://www.connecttristates.com/news/story.aspx?id=805042#.USY1_GekNWQ

http://thestir.cafemom.com/big_kid/143975/police_arrest_9yearold_autistic_boy

http://www.dailykos.com/story/2013/02/01/1182672/-Our-Autistic-Son-was-Handcuffed-and-Arrested-in-School-We-Were-Not-Notified

http://specialedadvocate.org/autistic-boy-11-handcuffed-on-school-bus-in-howard/

http://thetruthaboutpronerestraint.com/blog/general/another-teen-with-autism-handcuffed-and-arrested/

I was watching the Today Show this morning, and they did a report on The Ideal School located in New York.  This school promotes inclusion, where special needs children are in classes with their peers, not just special needs peers.  I do think this is a great concept, I believe that children can learn from each other and that lots of special needs children can benefit from inclusion; however, some of our special needs children can have extremely challenging behavior problems which can cause problems in these types of classroom settings.  A couple of years ago, I would have told you that there is no way my son could take part in a program like that, however, today I would feel more inclined to say say that I think my son would do fairly well in program like that, but that is a really big that would include a lot of “ifs” – detailed IEP, teacher relationship with my son, etc.   You never really know how your child will do in a program like this unless you “try it out”.

Again, I must say, however, (as the Ideal School did mention), my son would still have to have an IEP (Individual Education Program), the entire class learns the same topics, but lesson plans are are varied with each child.  For example, the entire class was learning about Beowulf, some children could actually read the book, while the other children learn about it in a different ways, especially those who do not have the ability to read a book of that level.  They may learn the story through “story time” activity, matching of characters to names, etc.  I applaud any type of efforts of inclusion; even though I do understand that it is not an option for all special needs kids; there are behaviors that have to be addressed.

Yet, it was so nice to see a classroom of special needs children with a diversity of other children, working together, laughing together and learning from each other.  I can definitely see some pros and cons of this type of classroom setting – anybody else have any thoughts on this?  Please feel free to comment.

For more information check out their website: The Ideal School.

No, this is not a “regular” blog, but I wanted to help spread the message about Autism York’s “Walk for Autism” event which is being held at Central York Senior High School on Saturday, April 13, 2013 from 10:00 A.M. – 3:00 P.M.

The Walk for Autism is an annual event that raises funds to improve the lives of those living with Autism in our local community.  In 2012, 2,500 attended and more are expected for this year’s event.  Monies raised through this even make it possible for Autism York to continue supporting local families through monthly meetings, family social events, a Resource Guide and Lending Library, education and awareness opportunities, the Buddy Project, Special Siblings Outreach Program, and more!

The event is held at the indoor track at Central York High School.  Walkers may choose to walk ANYTIME from 10:00 a.m – 3:00 p.m. 

 All registered walkers will receive a 2013 Walk for Autism Commemorative Pin (while supplies last).  Trophies will be awarded to the top Fundraising Teams and medals will be awarded to fundraising teams who raise $400 or more (one medal per team).

Click on the link below to view the flyer or get more information from the Autism York Website.

Walk Expo Flyer 2013

Friends of Amazing Kids (FOAK) is a non-profit organization that supports families living with Autism and other Special Needs.  FOAK was established in 2008 by Jenna Hall, Kelly Pascoe, Steve and Angela Brown.  They offer monthly support meetings and community activities for special needs families to socialize and network with others.  In addition, they also raise funds for organizations that provide services to individuals living with autism.

Support groups, such as this one, can be extremely helpful to those of us raising special needs children by providing an outlet to express frustration, the need for assistance and friendship.  As a special needs parent, isolation from community events and public places, unfortunately, is something that we often experience. There are certain activities we cannot participate in due to my son’s disability and sensitivities with light, sounds and large crowds of unfamiliar people.  Speaking to other parents who share similar struggles allows me to realize that I am not alone and that they are others who often struggle with similar challenges.

To date, FOAK has helped over 250 children living with autism in our local community. For more information, visit the FOAK website: http://thefoak.org or their Facebook Fanpage: https://www.facebook.com/thefoak