Laura Nagle’s “Vectors of Autism” 2

Laura Nagle At Pacific Rim Conference ©Delightfully Different Life

Those of you who actually read my blog know who Laura is already, but here are two prior posts about her for any who missed them:

  1. Helping Fund the Dialogue to Improve Our Children’s Future
  2. Three Voices of Inspiration: Promoting Accommodation, Acceptance and Appreciation of Differences 

The documentary, Vectors of Autism is now available for purchase. Its beautiful cinematography, animation, and music score help to bring Laura’s inspirational story to life, as she identifies the challenges she has faced and offers hope and insights to others. The documentary is worth every penny!

Go to: http://lauranagle.net/Film.htm to purchase!

Three Voices of Inspiration: Promoting Accommodation, Acceptance and Appreciation of Differences 3

What is Inspiration? The Merriam Webster Dictionary defines inspiration as “the act or power of moving the intellect or emotions.” People who work to change the world to a place where we appreciate differences inspire others. They accept the challenge to heal society of its wrongs. They raise their voices to educate others as they work to forgive them for their lack of understanding.

I am among the privileged that heard voices of inspiration recently at the Pacific Rim International Conference on Disabilities & Diversity. Their voices made me realize that they are not the ones disabled; society’s treatment of them gives this illusion. The truth is anyone who fails to see others soul to soul is far more disabled than anyone we call “disabled.” Society is wasting brilliant minds by failing to see this.

There was so much inspiration in one place! Three of the voices that inspired me the most were Keith P. Jones of Soul Touchin, Drew Goldsmith of IamNorm.org and Laura Nagle of Vectors of Autism. Click on the links for more information about them.

Keith P. Jones has cerebral palsy, but please do not feel sorry for him. He is one of the best voices for advocacy I have ever had the privilege to hear. He gave his presentation to a standing room only crowd while he cracked jokes and told how he handles those who inappropriately invade his personal space. Hint: Never ever ask to pray for him and then pray for the “sins of his mother.” His mother did not cause his cerebral palsy and she is no sinner!

Drew Goldsmith turns sixteen this month, but he has already accomplished much in his young life, so please No Pity when you learn that he is autistic. Not only is he a film creator, he also started a website I am Norm to educate others and change the perception of others about being “normal.” I love this young man and wish him all the best in the future. I know he can go far if society allows him to do so.

Laura Nagle is an Aspie woman who prefers being called an Aspie instead of Autistic because, “That man (Hans Asperger) got us.” I am proud to call her my friend. She found me on Twitter months ago and identified me as a “half-Aspie”, a term I have come to love. The movie Vectors of Autism premiers April 13th in Flagstaff, AZ on the NAU campus. She talks about how society holds people back much more than anything else does. She wants to heal society as do I. She does not like using the word disability and I understand completely. She and other adults give parents a better understanding of Aspie and autistic children in a way that no one else can.

Are Glee Writers Using the Autism Community to Improve Ratings? 6

Read what one blogger said, crown_of_weeds: Sugar, Self-Diagnosis, Appropriation, And Ableism: So Here’s What You Missed On Glee. Do you think they really are using the autism community for ratings? Is this really what our society has come too? I hope not. I really hope the writer did not understand.

Here is an excellent summary of different views in the autism community Debate Heats Up: Is Glee Making Fun of Asperger’s? | Child Mind Institute. There are people within the autism community who do not understand Asperger’s and there are professionals like Allen Frances who make things worse with this What’s A Mental Disorder? Even Experts Can’t Agree : NPR. Is it any wonder that girls on the high-end of the autism spectrum do not get the support and understanding they need?

Here is part of a comment I left on a blogger’s post this morning, “The news media, celebrities and others fight for the rights of sexual orientation, color, religion and even more severe forms of autism and other disabilities including Down’s Syndrome. Most people know what Down’s Syndrome is and most have heard and some are even getting that sexual orientation is not a choice for many. Yet even members of our family fail to understand my daughter. I have left churches that condemned other religions or those who petitioned against same-sex marriage so while your assumptions are valid, you made a leap that missed the mark when you assumed ‘tolerance has to be tailored to fit YOUR PARTICULAR disability or challenge.'” I speak out about injustices related to Asperger’s because people with a diagnosis of Asperger’s are a minority within a minority and girls with the diagnosis are even more of a minority. I speak out because the diagnosis is relatively new (1994), and it will no longer be used in a couple of years therefore, it is misunderstood more than most. Taking such a vulnerable group and making any type of joke at their expense is just wrong.

Please join my e-mail campaign to make a positive change if you agree with me. Find out how in my previous post Glee Needs to Apologize to Autism Community for Recent Episode.

Therapy? What Therapy? 13

This post is for Danette’s Best of Best at SOS Series where the topic this month is Therapy and Special Needs Children

First, a disclaimer.  This post only represents my point of view as it relates to my family and my child.  Everyone has to make the best decision for their child based on the best information they have.   

Therapy was practically nonexistent for my child. The initial psychologist did not realize my daughter was on the autism spectrum although we told him about her sensory issues with smells, clothes, and sound.  He told us to tell her that she was being silly and like dummies we listened to him.  He knew she had trouble with some of her friends and with transitions too.  I do not remember if we specifically talked to him about her literal thinking, but he knew she had trouble sleeping and for over three years he had the psychiatrist prescribe various medications for her for various diagnoses.  None of them worked well and all of them had side effects. 

I finally said enough! I weaned her off the medications and took her for three full days of evaluation with a neuropsychologist who gave her the diagnosis of Asperger’s.  I started reading everything I could get my hands on including Tony Attwood’s wonderful book The Complete Guide to Asperger’s Syndrome.  All of her symptoms suddenly made sense.  We had the right diagnosis, but we still did not have real help.  The neuropsychologist only had social skills classes for boys at the time and she did not offer any other services.  We moved our daughter’s bed away from the window and got her a sound soother and tried aroma therapy to help her to sleep.  We told her to read quietly in bed if she woke up and could not go back to sleep.  We got her Sims to play since it was popular with the girls at her school.  She also joined Girl Scouts.

We were reaching for anything that would help and when an optometrist suggested vision therapy might be the answer we jumped at it although it was not covered by insurance.  Over five thousand dollars later, we realized that he was not doing anything for our daughter that she had not done previously.  Plus, he actually thought she needed remedial help when she did not.  He jumped to this conclusion because she did not talk to him.  She did not talk to him because he insulted her intelligence and she did not like him. She took three years of ballet, a semester of gymnastics, a semester of musical theater and two years of tennis before we ever sent her to the optometrist all of which helped her coördination and balance.

I worked with her from the time she was a baby in more ways than I realized too.  I helped her play dress up in my old clothes.  I sat down with her for tea parties at her little table.  We blew bubbles in the backyard from the time she was old enough to walk.  We played with Play Dough and finger paint and we did puzzles.  I let her sit on the kitchen floor and play with a bowl of uncooked rice as I cooked.  Later, I added a big spoon for her to stir.  I helped her build with Lego’s and I used them to help her learn to count.  I talked to her constantly and pointed out colors and names of everything we saw.  A large alphabet foam floor mat helped her learn her letters.  When she had trouble pronouncing some words I showed her how to form the sounds.  We never talked down to her and she now has a bigger vocabulary and speaks better than I do.

So many things helped mask the true diagnosis.  I read to her from the time she was six weeks old using my finger to point to the words and the corresponding pictures, minimally twice a day.  I sat on the floor in her room with her and her Dr. Seuss books to help her learn to read when she was four.  I showed her how to put a bookmark under the line to help keep her place as she read.  She had a teacher who showed her how to remember b and d by using her hands to form the letters and we worked with her to help her learn left and right by having her wear a watch.

My daughter experienced severe bullying the year following the diagnosis and this caused me to find a psychologist who specialized in children on the autism spectrum to help her and us through the after effects.  This was the only therapy directly related to Asperger’s my daughter ever received. Yet, I see the value of therapy for many special needs children and I see the value of medication in limited cases although I think doctors need to be very careful when they prescribe psychiatric medications to children.  I also believe doctors need to listen to the primary caretakers and educate themselves about all of the symptoms of autism spectrum listed in the upcoming DSM, the Diagnostic and Statistical Manuel used to diagnose anything that falls under psychiatric services in the United States.

A big part of the problem in our case related directly to the lack of understanding of her sensory challenges.  The current DSM does not include sensory issues in the diagnosis of Asperger’s Syndrome.  I hope having Asperger’s Syndrome included in the autism criteria with the sensory traits being a part of the criteria will help others.  Life is easier when you understand your child and you have the tools to help them.  We did not help her enough with some of the sensory sensitivities because we did not understand.  This caused problems for her and for us.  It also caused her teachers to fail her and contributed to the bullying.  Understanding and getting the right help makes a world of difference.