Information on self-advocacy for parents with a child who has Autism or Aspergers syndrome


"We think our son with Asperger's syndrome could cope in the normal school system with some support from the teachers, but they can't see past his challenging behaviors and would rather not teach him."


"Our health insurance is using a legal loophole to avoid paying for interventions for our daughter. We've been through their appeal process without luck, and can't afford a legal battle."

"Parents with a son or daughter on the autism spectrum eventually find that health services, schools, child care services, and society in general, are not always inclusive when an Autism Spectrum Disorder is involved. "


Advocacy is concerned with fundamental human needs and rights about justice and equity for all people regardless of disabilities such as an Autism Spectrum Disorder. Advocacy usually addresses situations where:
• Others (service providers) have an obligation to you that they are not fulfilling
• Your rights are being ignored or violated
• You have a responsibility that is particularly difficult for you to carry out
• You are being misunderstood or are having trouble understanding others.


So why is advocacy important?

Advocacy is important because you and your child are important. Despite society’s progress in the way it supports people on the autism spectrum, there is still a lot of unfairness, exclusion and general misunderstanding within the community. This applies to many disabilities. For example, people with a disability often still do not have access to various buildings, services and community associations, which can be due to any number of reasons.

No matter what the issue is, or what reason you are given, you always have the right to ask why that is and what can be done about it. Being a strong advocate is important because it is a way for you or your child to access what you are entitled to, and have your rights as an individual within the community upheld the same as everyone else. Here are some more reasons why advocacy is so important:

• Advocacy can change community attitudes and misconceptions
• It can assist people to gain access to resources, funding and information
• Advocacy makes service providers accountable and ensures transparency in their actions and decisions
• Advocacy can help you have control over your situation
• It ensures that you have a voice and that it will be heard
• Advocacy makes sure that there is recognition of the rights of all people with a disability.


Where are all the advocates?

Many welfare organizations engage in systemic advocacy, which is primarily concerned with influencing and changing the ‘system’ in general (such as legislation, policy and practices) in ways that will benefit people with a disability as a group. Systemic advocates will encourage overall changes to the law, service policies, government, and community attitudes.

Individual Advocacy is when the advocate concentrates effort on only one person or a family. The advocate could be a staff member of an organization, a carer, family member, friend or volunteer. This type of advocacy is focused on the specific needs or situation surrounding the individual or person with a disability.

Most autism and Asperger's organizations do not provide individual advocacy. For some, their constitution or funding criteria may not permit it. For others, it is a lack of funding as individual advocacy is usually quite time-consuming and expensive to provide. Some larger associations may provide a measure of systemic advocacy to make a difference in the long term. This is why self-advocacy is becoming more common as welfare funding shrinks in the current political climate.

If you are seeking an advocate, contact your local autism and Asperger's organization to see if they can help, or if there is an agency providing individual advocacy services in your area.



Self-advocacy can be defined as the act of pleading or arguing in favor of something, such as a cause, idea, policy or active support, for oneself. By self-advocating you are providing yourself with not only the opportunity to resolve your issue, but to learn more about service providers, about other people, and most importantly about yourself. Trying to bring about positive change for yourself or your child can sometimes feel like an ongoing struggle that requires considerable time, energy, and commitment. Always know that you have the ability within yourself to achieve your goals, and no one can tell you otherwise.


Click here for a website that provides free self-advocacy resources


See the Family and Carer issues section of the website for more information.


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Parents face a tough journey in minimizing the developmental delays when their child has Autism or Asperger's. They will need to be strong advocates for their child due to the lack of proper services and supports for Autism Spectrum Disorders.