PARENTS, AUTISM AND SELF-ADVOCACY
"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
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
• 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
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.
for a website that provides free self-advocacy resources
See the Family
and Carer issues section of the website for more information.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
This autism fact sheet is under copyright www.autism-help.org