The handsome team over at TWS asked me to come up with a piece about Alabama based autism-meets-skateboarding organisation A.Skate. I was informed that Peter from Faith was connected so I contacted Peter along with founder of A.Skate, Crys Worley.
The spatial limits of print made for a tough edit because no one aspect of this story is less intriguing than any other. Ethyl Mercury in vaccines? Stimming? Skateboarding as therapy? All skaters have autism? “Curiouser and curiouser!” cried Alice…”
WE BEGIN WITH PETER
Here’s the run down of how we got started and what my experiences with Autism are.
Crys and I dated. I own a skate shop and live skateboarding. Her son Sasha has autism. So I was introduced to Autism 4 years ago by meeting her and coming into her children’s lives.
Crys is a mom that is so passionate about her child that she has given up everything to research, diagnose, advocate, and accept her son’s Autism. She has literally spent every penny she has to his therapy.
From my experience, autism was very rare in the 80’s and 90’s, ‘Rainman’ stuff.
1 in 10,000 kids used to be autistic and now in 2012 its 1 in 88 kids! It is steadily growing more and more, getting to be an epidemic (if that’s the right word). It seems like there are 2 sides to the causes; it gets really conspiracy theoryish but we believe is true. (I believe it is many things in the way we live these days; hormones in fast foods, exposure to toxins in water bottles, chemicals in soda… .who knows!!!!) Crys saw Sasha’s regression when he was vaccinated. This isn’t what we try to publicize with A.skate but I believe she is correct. If you look at other countries that do not vaccinate their Autism rates are very very minimal. Scotland for instance, Finland, etc. She can further get into that if you are interested.
So from a standpoint of someone that is learning more everyday about Autism here are some things:
- 1 in 88 kids is diagnosed
- Many characteristics are severe OCD’s. Social issues, anger issues, etc.
- In Sasha his OCD’s take over his whole daily structure. He only wants to sit on the left side, he always wants to be first, his food cannot touch other food, he will rename people and animals with names he chooses that are always 4 letters long, etc.
- These OCD’s make daily life trying and make social settings hard. He cannot play team sports (because he wants them to be structured his way). The OCD’s take over life so much that anger issues and “meltdowns” happen when something throws him off his structure. There are therapies for the kids, many of them you will see “stimming” (flapping hands) when they are either happy or getting worked up.
- “Pressure seeking” is a therapy for the kids. It’s a calming effect that soothes them. Weighted vests can be worn (look up Temple Grandin she built a mechanism that she would get in, pull a rope, and it would squeeze her to soothe her. She is a very famous autistic lady).
So skateboarding for many of these kids is a therapy form. The feeling of rolling and the pressure on the board is calming for them. It is also something they could never get to try because parents are very apprehensive of things that are social settings. But the kids can skate their own way, how they want, in a social setting and interact with other kids on their own terms. If they want to be alone and skate by themselves they can; or they can interact and make friends on their own. Its not so structured. Pumping on half-pipes really seems to be calming for them too. I guess its the pressure and the pumping feeling.
Skateboarding for the parents is a chance to introduce their child to a new experience and see if it works. These parents struggle to find social activities for their kids. Many of them sit at home and play Skate video games but have had no outlet to try it on their own. A.Skate opens those doors.
A.Skate also introduces guys like us to Autism. That has taught me compassion and understanding.
Here are some other terms:
- Spectrum: When a kid is on the autism spectrum, there are all different severities of it, mostly neurological disorders, some physical disorders.
- Stimming: When a kid starts hand flapping or picking at his fingernails or something repetitious.
- Aspergers: A more high functioning form of autism, usually just quirky ticks or ocd’s.
- ABA therapist: Is what many families have for therapy for their children.
- Meltdown: Is what it sounds like; huge temper tantrum or “their whole world of structure just fell apart”
- Typical: Is being referred to usually as the other sibling being normal or not on the spectrum.
A.SKATE FOUNDER CRYS WORLEY
Which 5 adjectives most effectively describe raising an autistic child?
These of course are my own opinions, some people choose to leave the negative out or not expose it but I’m being realistic. Of course there is the life-changing love and compassion you learn and mold into but it takes time to get there. The challenges of autism never go away, you learn to cope and redirect the challenges which makes life easier for all involved, especially the child.
From the beginning and forever my child will be somewhat distant from me and the rest of the world. He’s in his own world most of the time and it took a long time for me to accept and be ok with that. I wanted him to love me, to hug me, and want me to comfort him but he didn’t. He didn’t know how and I didn’t know how to change that. Although he is older, more mature, and very high functioning he still has difficulties letting people in.
It’s distressing worrying about your child’s future, what will happen to them, how will they learn to be functional. Months and months of speech therapy to pull a “wa” sound. Will he ever speak, if he does will he be limited, How do we go in public when he cries from the moment we step out of the car until he’s back home laying in his bed starring at the ceiling fan… how will he make friends without communication skills and his preference of being alone all of the time.
Life becomes demanding emotionally, financially, socially. Parents lose their friends and are no longer invited to birthday parties. Insurance rarely covers therapies or doctor visits. ABA (Applied Behavioral Analysis therapy) is necessary but at $50,000-$80,000 cost each year it’s impossible for middle class (even upper class) families to receive the proper therapies to have the chance to make it.
- Cunning (or strong) & Changed
The more we as parents work toward our goal of helping our children be more functional to have a chance to be independent the stronger we become, the more we are able to take on life’s challenges which eventually becomes a breeze. We learn to look at the little problems in life and write them off and we become better parents, better friends, better human beings. We are changed.
THE BEGINNING OF A.SKATE
When did you have the initial idea for ASkate? Was there an epiphany moment?
A board was placed in Sasha’s hands in 2008. Over a 2 year period skateboarding was introduced to other kids with autism locally and throughout the Southeast using social networking and autism message boards to find new people interested in meeting up at a skatepark we would be at. Fall 2009 there was an epiphany, I started receiving calls from strangers asking if I was the autism skateboard lady? And could I come hold a small get together in their area? By April 2010 A.Skate was formed as a non profit organization.
ETHYL MERCURY IN VACCINES AND HYPERBARIC TREATMENT
Peter explained that there is a very possible connection between your son’s autism and a vaccination shot he received. What are your thoughts/opinions/observations/findings in this regard? (I understand this is not the point you want to focus on with A.Skate but it is concerning and worth consideration I think)
There have been many articles debunking the link between autism and vaccinations. In our case, that’s absolutely what happened. Sasha was 9 months old when he regressed. That is very uncommon, the typical regression stage is between 18 months and 3 years old. Sasha was a sick child having 13 ear infections by 7 months old… he stayed on antibiotics for the first 7 months of his life basically until he finally had tubes placed in his ears. At his 9 month well check up he received a combination of 9 vaccines (which is usually 3-4 sticks of a needle). Through later investigation it was found out that Sasha was given 286 times the safe amount of injectable ethyl mercury (Thimerosal) through those vaccines on that one day. The night of his visit Sasha ran a 103 fever and became very sick. He cried for weeks and just didn’t seem right. Over the course of a couple of months he lost muscle tone in his face to the point that he could not close his mouth, he stopped babbling, developed 13 food allergies, he started having seizures, developed severe GI issues, he no longer had eye contact or seemed like a normal baby, and he presented all of the characteristics of autism. I immediately started evaluations with specialists but most everything lead to a dead end and me having to use Google to find answers of the cause. Sasha was placed in Early Intervention at 15 months old and diagnosed with autism at 22 months old.
I do not blame vaccines as the only reason, I could only assume at the time. There are many reasons that things could have played out the way they did but vaccines were the trigger to everything falling apart. Over the past 7 years Sasha has been through over 300 Hyperbaric Oxygen treatments (HBOT), received chelation of heavy metals (he was diagnosed by a mainstream doctor with mercury, lead, and aluminum poisoning), was placed on a wheat, dairy and egg free diet (for 5 years), has been through numerous rounds of meds to help suppress seizures, and had to have GI scopes which led to the diagnosis of Crohn’s disease and Ulcerative Colitis (by the age of 4 which is VERY uncommon).
So many factors could have been a part of his regression from the foods we eat, tattoos containing mercury passing along toxins to the fetus, a family history of auto-immune issues which seem to affect each generation more and more. Then there’s vaccines which contain a form of ethyl mercury which in small doses is considered to be safe, however it’s not clear if the CDC tested the side effects of 9 vaccines with ethyl mercury being given all at once. Although it may not affect one child’s neurological system it could affect another child who has a history of the above.
There’s no real answer and no real right way to go about helping your child. It’s trial and error. There are people and parents out there who condemn parents like me who believe that something such as vaccines triggered a regression. I understand their point of view because they had a child who was always that way; that they were, or felt, “different” from the beginning. But when you have 2500 pieces of paperwork from a mainstream doctor showing lab after lab after lab of poisoning and how the reaction from the vaccines could have contributed to seizures, GI issues, severe allergies, food allergies, and such it’s hard to just say “Ok, you’re right, because although there are mixed studies and information I’ll just keep doing speech therapy and it hopes that it will work; however it probably won’t because there is a true medical side that needs to be taken care of in order for speech therapy to work.”
Hyperbaric was what brought words out of Sasha’s mouth. It enforces Henry’s Law which is gas under pressure turns into liquid. The gas is the oxygen you receive in the chamber, the pressure is the HBOT going so many feet under sea level depending on the type of HBOT you are in, and the liquid is the HBOT allowing the oxygen to absorb into the bloodstream which puts oxygen in the brain causing new capillary growth. Sasha was 3 ½ when I took him for his first HBOT sessions. I was 3 weeks post opp from a MAJOR open heart surgery and I the moment I was cleared to drive I took him to Georgia and stayed 3 weeks doing HBOT sessions twice a day everyday. Sasha said his first real words after the 4th HBOT treatment, he said 9 words and his first word was Nanny (his grandmother). Of all the things I had tried and tested the waters with to see if it would help him, Hyperbaric is the one thing I feel helped him most. It actually helped me heal so much quicker from my heart surgery. I met a pro football player there during our stay. He was with his wife and son (who also had autism). They were sent there for treatment because he had recently had surgery in Atlanta and was told he would heal faster if he did a few weeks of hyperbaric. We were always in the waiting room together and came out of our sessions at the same time and he and his wife took notice to the huge change they saw in Sasha over the weeks. They ended up purchasing one for their home to use it with their son and to keep on hand for him to stay healthy from being a linebacker for the Redskins. Although I was never able to financially afford to purchase one for my home I never stopped saving and fundraising to pay for 40-80 hours of HBOT each year.
I was 20 when my journey began as a mother so being thrown into all of this with only 9 months of having a normal happy baby was very stressful and hard. Somehow we made it through and Sasha is one amazing bright little boy!
ANXIETY, PRESSURE SEEKING AND SKATEBOARDING
I watched Temple Grandin a while back. An amazing story. I found the whole pressure seeking thing pretty fascinating. What is your understanding/interpretation of the psychological and/or neurological pathology associated with this behaviour? ie Why does this happen? What does the pressure provide?
Persons with autism are constantly being stimulated by their environment in good ways and bad ways. Certain situations cause anxiety build up. For a typical person we deal with that easily and can settle down. For a person with autism their anxiety can be enhanced 100 times fold putting them in a state of mind of losing control or being impulsive and not knowing what theyre doing when they do it. When Sasha was little and couldn’t speak he would be so uupset all the time and I had no idea what he needed or wanted. He would throw himself into the wall, bang his head on a pillow, and once he put his head through a curio cabinet glass door which didn’t even phase him. To keep him safe his doctors told me to hold him in a bear hug and gently squeeze him until he calmed down. When things were so out of control it was hard to do that because he would head butt my chest which had been cut open and wired back together. It was a really hard time and honestly I have no idea how I got through it. It taught me patience and sympathy on a level I never understood until I was older and looking back.
What has been said is that when persons with autism are upset or have anxiety they run into hard objects or hit their head on pillows or beds to calm themselves down, the pressure of the impact is soothing. Why? I have no idea but I’ve witnessed it enough to know that it’s true. About a year ago Sasha completely lost it and was so angry over a piece of sidewalk chalk. No one was understanding why it was such a big deal to him that his brother had a certain color and he just kept yelling at everyone. He was so angry that he turned around and punched out a window to the garage door. Then he snapped out of it and was remorseful of his actions. It’s like he almost loses his mind to the point that he is so impulsive he just does things without knowing what hes doing until it’s too late. With skateboarding Sasha receives that same pressure seeking relief from riding his board back and forth on our half pipe. He falls and receives that pressure seeking relief then gets back up and goes at it again. When he had a bad day at school, I would say “go skate then homework”. He would skate for an hour by himself and come in happy, calm and collected. Able to communicate without stressing over something being out of place or whatever happened that day at school that could make him talk about it over and over until the next morning.
THE A.SKATE PROGRAM
Do you guys run regular ASkate classes or sessions somewhere?
We have ongoing clinics in several areas and we have clinics that happen 4-5 times per year in certain areas. In Cork Ireland there is an Askate clinic every last Sunday of the month at Touchwood Skatepark. In NY and NJ we hold about 3-4 events each year and in California we hold 6-9 events each year. North Carolina has maybe 3 events each year. I’m all over the country throughout the year because I’m constantly helping areas set up our program in hops that it becomes something ongoing. Up until the past few months Askate was funded out of my own pocket on a Dental Assistants salary so we were limited to what we could do and where we could go. Instead of saving for a Disney World vacation with the kids I would save for a skate trip and hold a clinic somewhere.
What events have you guys done so far?
I’ve lost count but we have held over 50 events between ourselves and our partners continuing our mission in our name.
Which events have you found to be most successful?
California has the most successful events because the entire industry is in California. There is a overwhelmingly amount of need. If we announce a clinic date (even 3 months in advance) that is serving 60 kids, it’s usually full within 20 minutes.
ALL SKATERS HAVE AUTISM
With interpersonal relations being such an issue with autism skateboarding seems like a good meeting point between sport and social interaction. This appears to be a central point of ASkate as described on the website. Can you expand on this a little?
I often say that skateboarders have “autism” although I don’t mean literally. Skateboarders are a culture of individuals who are “different”. Skateboarders have a stereotype of being punk kids who don’t fit in with the crowd and have bad attitudes. That is exactly what high functioning autism is. Quirky kids who don’t fit the standards of normal and need an outlet that allows them to be to themselves and clear their minds just like everyone else… for me I believe that skateboarding is that commodity. It doesn’t mean that it will help ALL kids with autism or that ALL kids with autism are capable of learning to do it on their own… but for many it does. And the kids who aren’t able to pick up on skateboarding as easily as others… they still receive the same benefits, they just need it to be in an environment that they can be successful at and that is what we offer.
All photos by Drew Burke. Used with permission.