Dr. Fuentes, a leading Autism researcher, published a checklist to help empower individuals living on the spectrum as well as educate those who worked or lived with individuals with Autism. The checklist is evidence based and is entitled “How to Support me.”
Dr. Fuentes says, “We see in our nations a radical evolution in the development of services to people with ASD.” He continued, “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.”
In addition to working closely with the Board of Spain’s Gipuzkoa Autism Society, where Fuentes acts as a research consultant, he enlisted the help of young adults living with autism to give feedback on early editions of the document.
These standards help empower patients with Autism and their families:
1. Remember that the individual is not “autistic.” They are, first, primarily and always an individual, a student, a child; and they have autism. Do not confuse the person and the condition. Friends and family should never the term in a negative or hurtful way. All children deserve to be respected.
2. Children with autism are not the “same” as others with autism. Make an effort to get to know each person as an individual. Seek to understand their strengths, weaknesses and personality. Ask them – and their friends and family, if they cannot reply – about their hopes and dreams.
3. Autism patients need services. Services should begin early. The diagnosis is -or should be- a public health concern throughout all of the countries of the world. There are instruments to monitor for it. These tools can apply in the context of screening for other disabilities. An early start will change lives! Roughly that about one quarter of siblings of those with autism will have developmental problems.
4. Children with Autism should be included in the health care system. The health care system can create access for patients living with the spectrum disorder by reducing waiting times and helping patients understand what will happen. Offices can help by using easy-to-read materials, pictures, and advanced technology to explain procedures. This could help other patients too.
5. Teachers and schools should not separate children with Autism. They belong with other children. Separation to for special treatment may not be helpful. Children with Autism can, and should, be placed in traditional schools and regular community settings with special support provided in those places. Each child has something to teach other children.
6. Children with Autism, when possible, should plan for their future and their transitions. Children with Autism belong with their family. When necessary, family and friends can speak on behalf of those with Autism. Government agencies should not attempt to replace the family. Families make sacrifices to raise children with Autism and deserve recognition for their hard work.
7. Evidence-based services need to be provided to those with Autism Spectrum Disorder. These services are often more difficult and time consuming, but they are helpful for cognitive and social skills. Medication is not a replacement for education and social services. New medical treatments may be helpful, but you should view them with some level of caution. Continue doing research, get children with Autism involved and ensure their rights are protected so they can help others..
8. Keep individuals with Autism active in society. Involve those on the Autism spectrum in vocational training so they can have a say. Services provided during adulthood should be led by determination, personal relationships, and activity in community events. The community should make an effort to adapt environments to help accommodate needs. This will help make our society better.
9. Those on the Autism spectrum face discrimination and disrespect for many reasons including fear and ignorance. Many individuals with Autism live in poverty and are at higher risk for violence and abuse. More community systems need to be in place to help those who are at risk, including immigrants on the spectrum.
10. Every child and person has a role to play in the world. Families dealing with Autism want to be involved in helping to create and shape policy development and evaluation. They motto: “Nothing about me, without me,” should guide leaders when making decisions about treatment and accommodations.