Here is a manifesto written on behalf of people with autism with the participation of themselves and their loved ones. It can serve as a guide for those of us who think about the place of special people in society and in our lives.
Joaquin Fuentes, a child psychiatrist, has worked with people with autism spectrum disorders (ASD) and their families for 35 years. “Working together, we have been able to create an excellent network of social services that is fully funded by the state and available to all local residents.” At the same time, the doctor is well aware that the achievements in his hometown do not at all reflect the situation in the world. In most countries, people with ASD did not receive adequate support. This prompted him to write a kind of manifesto that activists from around the world could use as a starting document.
Joaquin Fuentes emphasizes that although the text is written in the first person, he himself does not at all claim to speak on behalf of people with ASD. “I am not a person with ASD and I have no right to take away their vote,” he says. The draft text was submitted to a group of young people with autism and parents of children with autism for review. They added, edited and approved the final text. That is why it is published as a personal message.
- Stephen Edelson: «Realize, autism is treatable!»
1. I’m not «autistic». Always and first of all I am a man, student, child, and I also have autism. Don’t confuse me with my diagnosis. And please don’t ever use that word thoughtlessly or as an insult. I deserve respect.
2. I am a person. Having autism does not make me the same as everyone else with autism. Make an effort to get to know me as a person, to understand my strengths, my weaknesses, myself. Ask me (or my friends and family if I can’t answer) about my dreams.
3. Like all children, I am entitled to the services I need. In my case, services should be provided as early as possible. Autism is (or will be) recognized as a major health problem in many parts of the world. There are tools to find it. They should be used as part of a standard screening for developmental disorders. If I start as early as possible, my life will be different! And remember that one in four of my siblings has autism or other problems. Help them — they are an important part of my life.
4. Like all children, I am entitled to medical care. Provide me with standard medical services in full. The healthcare system needs to adapt to my needs: limit waiting times, use visual and easy-to-read explanatory materials, pictograms, technology aids, and so on. The rest of the patients will only benefit from this.
5. My place among other children. Do not isolate me from them under the pretext of my treatment, education, or care for me. I can and should attend regular schools and other educational institutions, and they should provide me with special assistance. I have a lot to teach other children, and I have a lot to learn from them.
6. My place is next to my loved ones. Plan my future and transition to adulthood with me. It is for me to make such decisions, and if my abilities do not allow it, my family and loved ones should speak on my behalf. No state structures can replace my family. And please make our society appreciate my family’s generosity when they support me instead of society.
7. I am eligible for services that have been proven to work scientific research. These services may not be the most familiar, convenient or simple, but when I receive them, my life becomes better. Do not use drugs as a substitute for education, treatment, and social assistance. In some situations, I may need drugs, and I hope there will be new developments in biological treatment, but you must be very careful in their use. Count on me for research projects, involve me, subject to all my rights. I want to help others.
8. I am a full member of society. Give me access to vocational training. I want to contribute. The services I will receive as an adult should be based on self-determination, relationships with others, and inclusion in all aspects of social life. Your goal should be to change the environment that I encounter, to modify the institutions and attitudes of the people around me. At the same time, it will make our society better.
9. I have human rights, but for many reasons I may face discrimination. Many of us live in poverty without any social support system. Some of us are immigrants or from minorities, including sexual minorities. Take gender into account. Girls and women with autism are often at high risk for violence, injury and abuse.
10. I am part of this world. I have my own role. I and my legal representatives want to participate in the definition of social policy, its development and evaluation. You need my help to understand what needs to be done. Expand my opportunities to influence the situation in society. Remember the motto: «Nothing about me without me.»
You can support people with autism in Russia at Exit Foundation.