In the past, people with autism or learning disabilities were shut away and completely excluded from decisions concerning their wellbeing. Happily, we now know this is not the best approach, and that is in part because of the hard work of advocates speaking from the perspective of people with autism and learning disabilities. Many learning disabilities programs have benefited from this approach.
What is learning disability and autism advocacy?
An advocate is someone who speaks up on behalf of an individual or group, trying to raise awareness of their situation, help them access support, and influence the decisions of those in power. Sometimes advocates are people from outside the group who act as a bridge between the group and authorities, but increasing importance is being placed on self-advocacy or enabling the people who are directly affected to speak for themselves.
We see this in a lot of disability rights activism, including those who advocate for the rights of those with autism and learning disabilities. The focus of many special needs education programs isn’t just on providing support, but also on empowering students to express themselves. To shape any support appropriately, the approach emphasizes the voices and desires of the individual with autism and/or learning disabilities instead of letting others speak over them.
The importance of advocacy
People who do not have autism or learning disabilities, especially those who do not interact with anyone with developmental challenges regularly, are not necessarily going to know what is best for those who do. It may not even occur to them to account for people whose brains function differently when setting policy or allocating funding. Failing to consider the needs of people with disabilities is one of the root causes of inequality.
Advocates can speak from the perspective of people with cognitive impairments. They know what works and what does not from first-hand experience. They have the best interests of those with autism and learning disabilities in mind, rather than trying to balance competing voices and interests. This gives their requests and recommendations a certain level of authority.
Having autism or learning disabilities or being the parent or guardian of someone who does, can involve ongoing challenges and stress in trying to access services or exert your rights. It can sometimes seem as though you are faced with an impenetrable wall of bureaucracy. You can spend more time arguing with officials than engaging in the necessities of everyday life.
Advocates are people with experience dealing with authorities, who understand not just the challenges, but the most effective ways to deal with those challenges. This can alleviate some of the stress you face and allow you to focus on other things. It is a way of being able to share some burdens.
Many challenges face people with autism and learning disabilities in a world that is generally not designed for them. Advocates can give voice to these challenges and actively push for better recognition and support. Hearing directly from people with cognitive challenges is the best way to ensure their needs are met.