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The Importance of Advocacy

All individuals with a disability will likely rely on the aid of an advocate at some juncture in their lives. An advocate works with the family and the individual to make sure the client with the disability is afforded every opportunity to reach his/her potential. Anybody can be an advocate. In fact, many individuals are already advocates without even realizing it. An advocate can be a friend, educator, parent, hired professional, and, most importantly, the individual with the disability. There are advocates who lobby for more rights, greater awareness, and better opportunities for the disabled community as a whole. Simply put, an advocate is a person or organization that “speaks, pleads, and argues on behalf of another person.”1 Individuals with an autism spectrum disorder (ASD) may need the aid of an advocate to further their education, career, or independence. This article will discuss what it means to self-advocate, how to successfully advocate as a parent on behalf of your child, and the pros and cons of hiring a professional advocate for your child.

Almost everybody self-advocates for themselves to some degree. Whether it is asking to have a seat closer to the chalkboard to cope with vision issues in the classroom or asking for dimmer lighting at the workplace, self-advocacy is a necessary part of independent life. Becoming a successful self-advocate “requires one to be not only literate one’s needs, but also knowledgeable about how to get them met in an appropriate manner.”2 No matter what the situation or environment, if you have an ASD you will likely have to provide some disclosure in order to become a successful self-advocate. According to Stephen M. Shore, author of Beyond the Wall: Experiences With Autism and Asperger Syndrome and other literature related to ASD, “while the primary goal of disclosure is to reach better mutual understanding with others, a better understanding of oneself also often occurs.”3 The individual must determine how much they feel they need to disclose based upon what the situation dictates. For example, a request for workplace accommodations, a common inquiry for a self-advocate, will typically require further information to justify why the accommodation is necessary.

The typical individual with autism will have their parents advocate for themselves throughout their childhood, but, as they age, the ability to self-advocate for themselves is a stepping stone to achieving one’s fullest potential. Self-advocacy is a skill that you will develop as you mature and get to know yourself. You must be aware of your particular needs, desires, and the steps necessary to fulfill those needs/desires, whether they are school-, employment-, or relationship-related. The teen years, especially the years in which the transition process of the Individualized Education Program (IEP) occurs, “offer a particularly fruitful moment of cultivating self-awareness, self-monitoring, and deeper exploration of what it means to be autistic.”4 According to the Autism Speaks’ Self-Advocacy Tool Kit5, the following bullet points encompass self-advocacy:

  • Speaking up for yourself
  • Asking for what you need
  • Negotiating for yourself (working with others to reach an agreement that will meet your needs)
  • Knowing your rights and responsibilities
  • Using the resources that are available to you
  • Being able to explain your disability either by the use of written words, pictures, or gestures

Direct instruction from parents, educators, and peers is likely necessary to help an individual on the autism spectrum to develop the above skills. Remember, just because you are self-advocating does not mean you are alone. There are dozens of organizations available to help guide you and keep you on the road to self-advocacy throughout your lifetime.

Parents are Advocacy
As a parent, you are the greatest advocate in your child’s life. Nobody knows the strengths and challenges of a child better than the parents; however, parents must not let their emotions disrupt their ability to successfully advocate for their child’s needs. Perhaps the most important part of being an advocate for your child is working towards constructing the ideal IEP for him/her. According to Wrightslaw: From Emotions to Advocacy, 2nd ed.1 authored by Pam and Pete Wright, the following are the two most important goals a parent serving as an educational advocate for your child:

As a parent you must be knowledgeable when it comes to your child’s Individualized Education Program to avoid making costly mistakes that could prevent your child from obtaining the best education possible. Being knowledgeable about your child’s diagnosis, interventions, community services, educational support services, and available technologies will help parents to become better advocates for their children. Incorporating the knowledge of your child’s likes/dislikes and strengths/challenges with an expert background on the different opportunities, services, and therapies afforded to your child allows you to become the best possible advocate for your child. The National Autism Network’s Resource Guide offers users access to a variety of resources focusing on these subjects and more.

Above all else, the most important thing a parent can do for a child with autism is to teach them to advocate for themselves. Self-advocacy is a necessary tool for an individual with autism to develop if he/she is going to maintain his/her independence. Although, while your child’s education and their ability to self-advocate are of the utmost importance, there are other ways you can help advocate for your child with autism and the autism community as a whole. You can be an advocate for autism by simply participating in local charity events that raise funds for research, services, and awareness. Autism Speaks often conducts Walk Now for Autism Speaks fundraisers for their organization all over the nation. Websites like Autism Votes allow you to enter in your zip code to find contact information for your local legislators to ask for support of various autism-related legislation. The advent of social media has also allowed autism advocates to come together like never before. By participating in autism support, awareness, and advocacy organizations you can help spread knowledge about the disorder and help make real difference in the lives of individuals affected.

Hiring an Advocate
Unfortunately, not every parent has the time or the resources to properly advocate for their child’s needs. In these cases, it may be necessary to hire a professional to advocate on the behalf of your child. There are several pros and cons to hiring a professional advocate. According to an article published by the magazine Parenting for High Potential 6, some of the advantages to hiring an expert include having a professional:

  • Who understands the laws concerning your child’s rights and the responsibility of the school system
  • Who will work to make sure your child receives the necessary related services, will work to create an appropriate educational plan for your child
  • Who can link parents and teachers to a variety of community resources

An advocate can help reduce the stress of IEP meetings by not only providing valuable input, but also by having a familiar face of somebody that you know is fighting for your side. A professional advocate must know the laws for the particular state in which they are hired to be effective at negotiating on behalf of your child’s IEP.6 When hiring an advocate it is important that they are qualified, have experience, are personable, are affordable, are willing to dispute unwanted measures of the IEP, and has available to him/her a network of resources related to your child’s disability.6

Unfortunately, in most states there is no certification process or schooling that an advocate must graduate from to be deemed an advocate. Anybody with a website, and the inclination for it, can call themselves an advocate for hire. A poor advocate can make a myriad of mistakes that can hinder the IEP process and ultimately your child’s education. Many individuals become advocates because they have been through this process before, but parents should be aware that sometimes an advocate may have gone through a bad experience in the past and may be reliving that experience through your case, or could be “ascribing attributes to some professionals based on how their child was treated or viewed, instead of yours.”7 Another potential risk is that in extreme cases the school system may not take you as seriously if you are taking advice from an advocate as opposed to a licensed attorney.7 All the advice that you receive, either from an advocate or licensed attorney, should be carefully reviewed and examined and the final responsibility for all decisions lies with the parents.

The National Autism Network Resource Guide has a directory of autism advocates for hire by state searchable through zip codes.