Since then, a lot has happened in the field, and the world’s autism community has gone from focusing on raising awareness of the diagnosis spectrum to an ever-increasing focus on diversity, human rights and quality of life throughout life.
The autism spectrum is just as diverse as the word suggests. Have you met one person with autism, you have met one person with autism. If a solution has been used to help one person with autism, it is by no means a given that it will work for another. What is a challenge for some is a resource for others.
People with autism can be found at all ages, in all cultures and in all walks of life. Where some have a university education, a family and live active and independent lives at the front line of the social debate, others live in seclusion without language and with great nursing and care needs throughout their lives.
People with autism may have difficulties with language, rigidity and social skills. However, this does not mean that they do not have social needs or ways of expressing themselves, BUT that they may need tools and help to realize their potential.
We all have varying degrees of autistic traits, but for around 1% of the population these traits are so pronounced that it gives a diagnosis on the autism spectrum, and so more and more genes, syndromes and conditions are associated with autism spectrum disorders.
The fight for the rights of this group is part of a broad equality perspective with a focus on human rights and the uniqueness of each individual person. It wasn’t very many years ago that people with autism were secluded and shunned. Today, people with autism are far more visible, autism is talked about in many arenas, and thanks to international awareness campaigns, we have become better at including and facilitating the resources and strengths of the individual.
However, there is still a long way to go.
People with autism are overrepresented among students who drop out of school, and the lack of provision is made visible in the ever-increasing proportion of involuntary school absences.
People with autism often do not have access to BankID and bank cards, with the limitations it has on being able to use mobile apps, identify themselves and pay for themselves.
People with autism are more exposed to additional psychiatric diagnoses and comorbidity without the healthcare system necessarily having the knowledge and resources needed to be able to help this group as best as possible, and among people with autism both coercion and violations from the support system are part of reality.
For many, the battle to get a diagnosis is both long and complicated, without necessarily getting that much better at the other end.
Relatives fight lifelong battles for the quality of life of their loved ones, and that against a habilitation field that is constantly subjected to major cuts.
Every day the human rights of people with autism are violated, even though the UN Convention on Human Rights for Persons with Disabilities (CRPD) has been ratified and MUST be followed in all areas of society.
The government has still not fulfilled its promise to incorporate (CRPD) into the legislation, even though the government-appointed committee follows the user organizations and recommends incorporation into the Human Rights Act.
World Autism Awareness Day can be a great opportunity to do so.
It is also a good opportunity to highlight the need for enough resources to reduce the investigation queue in the specialist health service, as well as competence and resources in the municipalities that will follow up and offer each individual the most seamless services possible in all phases of life.
If you have met one person with autism, you have met one person, a person who has the right to and need for a good life, all his life, regardless of the municipality of residence and the resources of the individual and their relatives.
Cæcilie Ofstad, Nancy Antonisen, Teresa Pham, Linda Ørseng, Scott Drangsholt, Emilie Nesheim Borøy, Ragnhild Wennberg
