Pbmom's Blog

April is Autism Awareness Month. Phooey. It needs to be Autism ACTION Month. We have had enough awareness. What would help us the most (are you listening Autism Speaks?) is an Autism ACTION month. We need action to help the families who are suffering RIGHT NOW, who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, people who have had to take their children out of private facilities because insurance would no longer cover them, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

Medicine and psychiatry have been debating the causes of autism for more than 60 years now yet we have no concrete answers and the numbers are rising. When people tell me that it is 100% due to better diagnosing, they are right to a SMALL point. But listen up! When Patrick was diagnosed (in the summer of 1997 when it was still 1 in 10,000), when I would say “my child has autism” to people, they would say, “Well what is it? What causes it? I’ve never met anyone with autism before.” Indeed in all of my life up until Patrick was diagnosed, neither had I. Now when I’m out at the mall or in a store, Patrick is not the only person there with autism. I see it. I can pick out the adults and kids who obviously have it; I’m sure there are others I would pick up on if we had a conversation.

If you all are concerned about Social Security going bankrupt by baby boomers, you should be TERRIFIED of what is going to happen when Patrick and all the children behind him grow up and can’t get jobs because schools chose to not educate them. It is the only neurological disease that is not covered by health insurance and we still fight that battle just to try to get our children covered. If they get treatment, many of these children will go on to become taxpaying adults able to hold jobs. If we don’t, they will test the social support system of the government like nobody is ever imagining. The only reason why it is within the realm of psychiatry is because of its psychiatric features. But there are many physical diseases that have psychiatric features.

I am not a fan of Autism Speaks. They are not good stewards of your hard-earned money. Here is a copy of their 2010 tax return. People are generally shocked when they hear me say this because they think Autism Speaks is the gold standard of charities.  Only about 4% of what they get actually helps families. They do not have anyone with autism on their board of directors to help guide them in what people with autism need directly from the people they are supposedly serving. While it is great to use some funds for research for finding the cause, they will never find possible prevention if they are closed off already to some research that does point to vaccines. They lobby in Washington now and they can’t have a cozy relationship with the US Government because the US Government can never admit this. They have to take the party line that vaccines do not cause autism….although there has never been a study that studied the cumulative effect of all these vaccines…and the US Government has been awarding some families who have been harmed by autism under the disguise of encephalopathy which just means damage to the brain. And autism IS damage to the brain. I don’t like some of Autism Speaks advertising either. It offends me.

So here are my suggestions for this month:

Wear your blue on April 2, change your light bulbs blue if you want, dye your hair blue if you want. In that moment you can bring awareness.

Then help with action.

Donate to a local group. This way you know your hard-earned money is staying in the community and going directly to help the children because most of the people in these organizations are volunteers. Here are some local groups I can vouch for that will be good stewards of your money:

FEAT-Houston (Families for Effective Autism Treatment): FEAT-Houston is a non-profit organization that provides information and training on treating individuals with autism spectrum disorder using techniques based on applied behavior analysis (ABA). We sponsor workshops, meetings, a newsletter, and regular emails. Our tuition reimbursement and conference stipend programs help support the development of ABA resources in the Greater Houston area and make it possible for more teachers and parents to learn about effective teaching methods for children, teens and adults with autism. We are supported primarily by individual contributions and volunteer efforts.

F.A.C.E.S.: My son was helped by these people. They gave us a grant that allowed Patrick to stay at his school where we reached a point where we might have had to take him out of Including Kids. The Foundation for Autism Care, Education & Services (FACES) is a non-profit 501c3 foundation founded by Larry and Pat Wallace. It is the mission of FACES to raise funds to directly support and promote education, service and Applied Behavior Analysis (ABA) therapy for families faced with Autism Spectrum Disorder. The funding for the foundation comes from both public and private party donations, as well as fundraisers involving private individuals and organizations.

Desperate for Respite: desperate for Respite (dfR) is a non-profit charitable corporation organized exclusively for charitable and community development purposes. Our corporation exists to provide support to caregivers caring for special needs children, dependent adults and their families in the Northwest Houston area, that face the challenges associated of caring for an individual with some level of disability; raising awareness and educating the community by developing relationships and community responsibility for supporting caregivers and their families.

Houston Autism Disability Network: Where Hope Takes Flight! Mission: Information & Resources for Autism Spectrum Disorders & Special Education assistance. Networking meetings for parents & professionals each month, special seminars & annual conference. HADN strives to be a unifying, non-competitive resource for Houston area — in helping to host events and inviting speakers to share their resources & information!

Autism Society of Greater Austin: The Autism Society’s mission is straightforward: “improve the lives of all affected by autism.” In Central Texas, the Autism Society of Greater Austin strives to achieve this goal in several ways: Advocating for the education and training of parents and professionals involved in the educating and caring for persons with autism; helping develop a better understanding of the challenges of persons with autism and their families by serving as a clearinghouse for information about autism; supporting families and professionals through monthly meetings, workshops, on-line vehicles, and printed material; we also sponsor events that are just for fun–come join us! The Autism Society of Greater Austin is a 501(c)3 organization that depends heavily on donations. Please know that contributions are tax deductible and will be used locally.

If money is difficult for you right now, then you can help with your time and talent. If you know a family with a child with autism, offer to babysit for just 2-3 hours. They really need a break. Offer to take the child out with your family on an outing you are doing. Schedule a time to bring lunch over and sit with us for an hour or two and listen to us. We might need to talk about things going on, or perhaps we would prefer to listen to what is going on in your life to keep our minds off of things for awhile. Support legislation that helps autism, which also includes Medicare and Medicaid for those who are adults with autism. Support employers who hire people with autism in their company. There are so many ways you could help in action.

So wear your blue April 2nd and move into action!