Friday, September 3, 2010

Autism, An Equal Opportunity Disorder

Frances Vega-Costas
www.viviendoenotradimension.com
dimensionautismo.blogspot.com

Autism is a very complicated disorder and not only affects each individual differently, it strikes anywhere in the world. Never in my life would I imagine that I would be a special education advocate nor that would I use the “A” word almost on a daily basis. Almost ten years ago the “A” word moved into my house and it has been a very interesting relationship with its ups and downs but as any regular couple we learned to live with each other in peace, accepting each other as we are.

My son was diagnosed almost at four with PDD-NOS, which by that time I did have an understanding of, and to be honest for me is a fancy label for “we don’t know in what part of the ASD Spectrum your son is”. Since he was 18 months we began to see that something was wrong with our only son, and due to the lack of resources in my native country, Puerto Rico, it took a lot of time to find out why he lost his speech, lost his sleep and was lining blocks for hours every day. Autism Spectrum, it could not be. Why this is happening to us? We decided to get help and look for services.

Then he was too old for Early On Services (there is a long waiting list), the head start did not let us register him because we did not qualify because of our income (yeah, right!), we had a few horror stories with a private school supposedly for children with disabilities and then we finally decided to put him on the public school system, there is IDEA 2004, why should I worry? (How naïve and trusting I was back then!)

I will spare you the two years of complaints, meeting, fights, and the nightmare of trying to make the agencies understand that you are just asking what for what your son needs to have a better future. Frustrated with the system we decided to move to United States. Because of my frustration and because the teachers kept complaining that there was almost no information about autism in Spanish, I decided to gather all information about autism in Spanish and make a website. And in March 2006 Viviendo en otra dimension (www.viviendoenotradimension.com) was born. Meanwhile we were making the arrangements to leave our country, and moved to Michigan in the fall of 2006.

The two weeks after I registered my son in school, they did that IEP meeting to match the services I had in Puerto Rico, they had somebody translate it, and we were so excited, finally the kid was going to get what he needed. So, after two months of our first winter ever, the school did an emergency meeting to discuss placements because things are not working out. It took me a little bit more than a year and a Special Education Advocate to make the school district understand my son’s needs and design an appropriate IEP and behavior plan for him and right now things are great. Now inclusion is a possibility and he has made gigantic progress.

But it made me realize that I was lucky -- I was fluent in English and yet I had to use translators. The cultural differences made things more difficult and sometimes complicated. I never felt more alone in my life. My family and friends were miles away, and I live in a city where there are almost no Hispanics. That’s the reason why now, as a special education advocate I do cultural competency presentations for school districts and agencies. So I am going to share a few tips on how to reach Hispanic families:
  • Not all Hispanics are Mexicans. Hispanic is not a race but an ethnic distinction. Hispanics come from all races and physical traits. Hispanic describes cultures or countries that were once under Spanish rule (Mexico, Central America, and most South America where Spanish is the primary language). Hispanics share a common language, but their cultures, values, and beliefs, are unique. To assume that all Hispanic cultures are the same is a critical mistake.
  • When you are working with a Hispanic Family, use the family’s preferred language. Find a fully bilingual interpreter, even if the family is fluent in English. Imagine you are in a meeting with 15 people you don’t know who are making decisions about your kid’s future and you are so nervous you are having trouble speaking, imagine doing that in a language that is not your native one. And it doesn’t hurt to learn some basic Spanish words, like greetings, those details make such a big difference.
  • Make sure your materials are not only in Spanish but culturally relevant, use artwork or pictures who reflect the Hispanic culture. “Invite” and encourage involvement from the very beginning. Be aware of a general distrust of American/Anglo culture and outside influences.
  • Don’t forget that the traditional Hispanic Family is patriarchal so that means the father usually has final say in making decisions. Don’t be surprised if in an IEP meeting the Hispanic mother don’t want to sign it until her husband reads it and give his approval.
  • Disability is still a taboo topic for most of the Hispanic cultures. And that is one of the biggest challenges for the providers. Autism is still perceived as an emotional illness than a developmental disability in most of these countries. And to add to it, sometimes autism is used as an adjective to refer to egoistical individuals or bad politicians and that’s something that parents with kids diagnosed on the ASD spectrum in Latin America are fighting against. As a provider reinforce that autism is a developmental disability and that the earlier the interventions the better outcome.
  • Remember that to understand different cultural beliefs and practices requires flexibility and a respect for others view points. Be sincere and firm, but not condescending.
Quite simply, Providers who are respectful of and responsive to the beliefs, practices, cultural and linguistic needs of diverse consumers can help bring more positive outcomes.

“Diversity is not about how we differ. Diversity is about embracing one another's uniqueness." - Ola Joseph

And that is one of the best lessons Autism has taught me: to love and respect life as is.