By: Beth Vaughan
With the holidays quickly approaching, we should all be feeling an increased sense of caring and support for one another. From canned food drives, to just holding the door an extra second longer for a stranger, supporting one another is one of the greatest gifts we can give during the Season.
On the topic of support, a leading autism researcher (Dr. Fuentes) published an evidence-based checklist titled, “How to Support Me,” with the intention of empowering individuals on the autism spectrum, as well as to educate those who work with them.
Dr. Fuentes says, “We see in our nations a radical evolution in the development of services to people with ASD,” he says. “We consider them full citizens, who must receive personalized support in within their communities. We must pay attention to their hopes and dreams when planning for their futures, to empower them and their legal representatives to make decisions, and to favor their pursuit of self-determination, satisfying relationships and full inclusion in their search for quality of life.”
Dr. Fuentes enlisted the help of young adults affected by autism to review and improve early drafts of the document. He also consulted the Board of Families of Spain’s Gipuzkoa Autism Society, where Dr. Fuentes serves as a research consultant.
The tips begin:
1. I am not “autistic.” I am first, foremost and always a person, a student, a child; and I have autism. Do not confuse me with my condition. And please do not use the term in a negative or inconsiderate way. I deserve to be respected.
2. I am an individual. Having autism does not make me the same as other people with autism. Make an effort to know me as an individual, to understand my strengths, my weaknesses and me. Ask me – and my friends and family, if I cannot reply – about my dreams.
3. I deserve services. Services for me begin early. Autism is – or it will be when recognized – a public health issue in many countries of the world. There are instruments to screen it. They should be applied in the framework of screening for other developmental disabilities. If you start soon, my life will be different! And remember that about one quarter of my siblings will have autism or other problems. Help them. They are an important part of my life.
4. I belong in the health care system, just like all children. Include me in regular health care. The health care system should adapt to me, limiting waiting times and ensuring that I understand what is to be done, by using, for example, easy-to-read materials, pictograms, technologic means, and so forth. Other patients also will benefit.
5. I belong with other children. Do not separate me from them because you want to treat me, educate me, or care for me. I can, and I should, be placed in regular schools and regular community settings, and special support should be provided to me in those places. I have something to teach other children and something to learn from them.
6. I belong with my family. Plan with me for my future and my transitions. I am the one who should decide, and, when my ability to do so is limited, my family and friends will speak for me. No government agency can take the place of my family, and, please, make sure that our society values my family’s generosity when they support me on society’s behalf.
7. I deserve the right to evidence-based services. These may not be convenient or easy, but when I get them, I do better. Do not substitute my educational, health, and social support with medication. I may require medication, and I look forward to new developments in biological treatments, but you must be cautious in their use. Count on me for research ventures; get me involved, with all my rights protected. I also want to help others.
8. I belong in society. Engage me in vocational training. I want to contribute. The services I need during my adult life should be guided by self-determination, relationships, and inclusion in all the activities of my community. Your goal must be to adapt the environment I have to face and modify settings and attitudes. It also will make our society better.
9. I have human rights, and I face discrimination for many reasons. Many of us live in poverty with no community support system. Some of us are immigrants or minorities, including sexual minorities. Keep a gender perspective. Girls and women with autism are often at greater risk of violence, injury, or abuse.
10. I belong in the world. I have a role to play. We, and my legal representatives, want to be involved in policy making, its development, and its evaluation. You need my help to know what should be done. Empower me. Remember my motto: nothing about me, without me.