If you are a parent whose child has been diagnosed as being on the Autism Spectrum—or a loved one, educator, guardian or companion of the child—advocacy will become a big part of your life.
It’s a word that probably sounds more formal than its meaning, and it’s something that every person involved in Autism does. It becomes a part of you. Advocating can mean going to bat for and working for the rights and successful development of the person on the spectrum; it can mean explaining his or her situation to others and educating them; or helping him or her get the most out of life.
We identify three major varieties of advocacy for those caring people on the spectrum:
1.Advocacy for Rights and Accommodations
This type of advocacy involves being sure that your loved one on the Autism Spectrum has access to facilities and opportunities to be comfortable when in stores, places of entertainment, restaurants, etc.
2. Advocacy for Understanding
It is important to be proactive in advocating for your autistic child (grandchild, student, etc.) among friends and acquaintances and strangers in public. The child can’t be expected to understand the condition without some help. This kind of advocacy involves giving people a sense of how Autism affects your loved one and what sorts of things you child is comfortable with or where your child can excel.
3. Political Advocacy
This is like other political or social activism one would engage in: Contacting elected representatives and administrators to petition for change in policies.
A fourth type of advocacy is advocating in education, throughout your child’s (or loved one’s) time as a student. However, that issue is large and complex, with so many specifics that we aren’t able to adequately cover it in this post.
Now that we’ve identified these major types of advocacy, let’s go through each one and give some pointers and resources for each.
People with loved ones with ASD know that issues often arise in public, particularly on longer outings, like trips to museums or zoos, movies, or lengthy shopping trips. Issues can also arise on holiday gatherings with family or events like open houses or birthday parties.
It can be scary for parents to think of what unknowns may occur in these situations, or to know that, for example, bright lights in a big box store might bother a child with ASD or salespeople coming up to your child and asking if s/he needs help may be upsetting. The crucial thing to avoid is assuming that there’s nothing you can do in these situations.
Many businesses either have specialists for people with disabilities or will at least be accommodating. Large companies who specialize in the guest experience, such as AMC Theaters and DisneyLand, particularly have experience. But at any business you can ask a manager (calling in advance is probably best) and you may be able to have accommodations you need, such as a quiet room the person on the spectrum may need to go to or something similar.
A 2016 program, the Autism Friendly Business Challenge, identified business with Autism-friendly programs, and issued a challenge for as many businesses as possible to develop their own programs. This ongoing effort demonstrates increasing awareness and positive actions taken by businesses.
Advocacy for Understanding
It’s also important to advocate for your ASD loved-one among family members and members of your community you’ll be interacting with. It isn’t advisable to keep their needs a secret, feeling that it’s better not to make a big deal about it.
It’s your decision how and when to communicate the person’s needs and to which members of your circle, but doing so can make life more comfortable for the person on the spectrum. It can begin by explaining what autism is and how it is that your child/loved one is sensitive in certain ways or unable to communicate certain things.
Advocating in this way can involve planning ahead before events and gatherings. It can involve finding out which activities will be done, what kind of stimulation will be there, and if foods will be served that your child can’t eat.
It also includes talking to the person with ASD as you prepare him/her to self-advocate. As appropriate, people with ASD can be encouraged to speak up for themselves and to remember that strangers don’t know their unique challenges.
There are a couple of main forms of advocacy you may engage in concerning public policy. One can be finding out the relevant laws concerning your loved-one who has ASD and advocating to make sure s/he receives all services and rights available. Another is trying to insure that local businesses or other organizations are complying with laws or trying to change policy as necessary.
It’s important, as a start, to understand the Americans with Disabilities Act (ADA) and the way the Social Security Act applies to your family, as well as Supplementary Security Income (SSI). Resources are listed below.
Another form of advocacy can be helping your ASD loved-one register to vote at the appropriate age.
Being informed on any issues involving disabilities, many of which pertain to education, is important. Then, as needed, be sure to contact your local legislators. This is a great way for anyone touched by ASD, even those who don’t have a family member with autism, to make a positive difference. It takes as many voices as possible.
Advocating as a Community Member
There are many important advocacy activities for parents, grandparents, siblings, and guardians of people on the Autism Spectrum. Yet people with neighbors with ASD, whose children have friends with these special needs, or any member of the community who believes in increasing awareness has many opportunities to do so.
It can begin with looking out for the needs of people on the spectrum as a member of a community and at events where they are present. It can be hard for a few family members to communicate with everyone involved, so having an informed group of friends can be very helpful.
It can also mean participating in letter-writing campaigns or serving on committees or advisory boards. It’s important for those with a sensitive outlook on people with special needs to spread an awareness.
Here are a few resources to help with advocacy for Autism.
Our Resources Page lists foundations and organizations and many volunteer opportunities
Autism Speak’s Advocacy Toolkit has detailed information on advocating in educating and in all areas.
ADA.gov – The official government website of the Americans with Disabilities Act.
Rehabilitation Act – Information on anti-discrimination legislation.
Self-Advocacy Online - Has many resources to teach those with ASD and other special needs how to be self-advocates.
Autism Spectrum Disorder Foundation Donation Page - If you’d like to donate to one of the major organizations that helps families with a person with ASD, this is the page.