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



1 What constitutes discrimination against people with special needs?
2 How does one recognize discriminatory behavior?
3 What are the negative effects of discrimination on parent of children with special needs?
4 What are the negative effects of discrimination on people with special needs?
5 How can the advocates for people with special needs work against discrimination?
6 Steps to take to address discrimination against people with special needs


What constitutes discrimination against people with special needs?

As parents of children with special needs you need to be aware of the impact of discrimination in the life of your children. Discrimination against people with special needs includes the:

• Negative attitude or stereotyped beliefs people have about those who are ''different'' or those with disabilities.
• Suspicious lack of trust or uncomfortable way in which people react to the announcement that a child or adult has a disability or special need.
• Fear, worry, and dismay on the part of relatives and friends who find it difficult to maintain ongoing contact with parents of a child recently diagnosed as having a disability.
• Ignorance, lack of information and lack of understanding of people who disregard, neglect, or avoid the parents and children with special needs.
• Cultural and societal stereotypes, prejudices, or bigotry against main streaming people with disabilities or special needs into ''normal'' society.
• Hidden, masked, and unidentified lack of pressure on the school systems to improve, increase the funding, and innovate in providing services to exceptional education students.
• Lack of advocacy in terms of full funding, legal action, and policy formulation, in support of the Americans with Disabilities Act (ADA) for the full ''normalized'' employment of people with disabilities or special needs.
• Lack of full funding and advocacy for adult day programs, sheltered workshops, supported work programs, and subsidized work programs to meet the employment needs of those with disabilities.
• Lack of full funding, advocacy, and appropriate zoning laws for group homes, supported living and supervised apartments, and subsidized apartments for people with disabilities.
• Lack of full funding and advocacy for the lifelong social, recreational, and leisure needs of people with disabilities.


How does one recognize discriminatory behavior?

As parents of children with special needs, you need to be alert and vigilant if there is discrimination occurring to or around your children. This is important because you as advocates for your children will want to take steps to address this discrimination. You will know it is discrimination when:

• You bring your child into a public facility like a mall, restaurant, or park and you sense people staring or whispering.
• People stop you and ask cold, cutting, and insensitive questions about your child.
• Public or private buildings lack appropriate ramps, access points, and other physical supports for people with handicaps and disabilities.
• You want to talk to someone about your feelings, worries, and concerns and everyone either ignores, avoids, or reassures you that everything will be OK.
• Your friends and relatives begin to avoid you and your child.
• There are major, drastic, and deep cuts at the federal, state, and local levels in funding educational, medical, social, and rehabilitation programs for people with disabilities.
• Parents in the neighborhood do not allow their children to associate with your children for fear that they will ''catch'' the disability.
• You realize that people only see the handicap or disability and do not recognize the people with the handicaps or disabilities as "people.''
• Your church, mosque or synagogue offers no special programs or support to you or your child.
• Support programs are not offered to parents of children with disabilities by the agencies that serve them.
• There are waiting lists of three years or more for day employment programs or residential services for adults with disabilities.
• You continue to hear derisive slang expressions used to refer to people with disabilities, such as ''retard, crip, geek, gork, gimp, tard, bozo, imbecile, dumbo, dumdum, boom boom, bimbo, stupid, weirdos, dummies, stupos, nerds.''


effects of discrimination on parents

Because discrimination exists in our society, you as parents of children with disabilities, handicaps and special needs will be negatively impacted. Some of the ways you might begin to behave as a result of such discrimination are:

• Become highly defensive against any negative reaction to your children.
• Have a tendency to overly protect and hide your children from such negative reaction.
• Resent the negative attitudes displayed by your own parents, relatives, and friends.
• Become suspicious of anyone who ask any questions about your children.
• Begin to feel like you are carrying the burden of care for your children alone, with no support from family, friends or the community in which you live.
• Begin to feel like you will always have to ''fight city hall'' or ''cut red tape'' to get your children help.
• Begin to feel isolated and alone in your efforts to help your children.
• Begin to feel misunderstood and ostracized by people in your lives for actions you have had to take in order to help your children.
• Begin to feel paranoid whenever you take your children into the public eye.
• Become resentful toward parents with ''normal'' children who have it ''so easy,'' and yet complain about their children and complain about ''how hard" they have it.


effects of discrimination on people with disabilities

Because discrimination exists in our society, people with special needs, your children, will become negatively impacted. You will be able to identify if your children are suffering from discrimination by some of the following. Children with special needs will react to discrimination by beginning to:

• Find it difficult to understand others' reactions to them.
• Find life lonely, unable to play with the kids in their neighborhood.
• Resent having to go to special classes or schools rather than to the regular classes in the neighborhood schools with their friends.
• Feel self conscious about their differences.
• Feel resentful about how others treat them, like talking loudly or slowly to them.
• Find it difficult to compete for academic honors or scholarships in public high schools.
• Find it hard to get into colleges of their choice.
• Find it difficult to get competitive employment.
• Have fewer resources to use for day programming or housing when they reach adulthood.
• Are sometimes unable to participate in religious, cultural, leisure activities and recreational programs of their choosing.


How can advocates work against discrimination?

You as parents of children with special needs can become anti-discrimination advocates for your children. In your advocacy endeavors you will meet others who advocate for people with disabilities, handicaps and special needs. You as advocates, who promote the reduction of the impact of discrimination against people with special needs, have the following tasks ahead of you in your fight:


Continue to lobby forcibly at the federal, state, and local levels for funding of educational, social, medical, and rehabilitative services for people with disabilities. Continue to lobby to open churches or synagogues, social clubs, civic organizations, leisure, and recreational clubs to serve people who have disabilities.


Instruct the public, medical, and professional communities as to the need for early identification and intervention for those with disabilities. Provide an ongoing forum in the print and electronic media to dispel the myths and stereotypes surrounding people with disabilities.

Openly confront and educate physicians, relatives, and friends about the nature, cause, and treatment of disabilities. Continue to promote and sponsor fund raising for the private, nonprofit organizations serving people with disabilities and special needs.

Work with curriculum developers and text-book writers to ensure that stereotypes of people with disabilities are discontinued and that accurate information about people with disabilities is included in the K-12 curriculum, in college, and in medical training programs. Demonstrate publicly that disabilities hit at every socio-economic, racial, religious, ethnic, and regional level in our society.

• Educate the public that having a child with a disability is not the most devastating thing to occur in life. Mainstream and get children with disabilities included into preschools, day care centers, and elementary schools to teach the ''normal-typical'' children that they have nothing to fear from associating with these children.


Steps to address discrimination against people with special needs

Step 1

Before you begin to address discrimination, determine the level of discrimination you or your child is experiencing. Answer the following questions in your journal:

How do you know when you are experiencing discrimination because of your target child's disability? How does it make you feel? How do you react to it?


How do you feel about always needing to be an active advocate to ensure that the societal discrimination does not prevent your child from getting optimal services?


How do you feel about funding cuts at the federal, state, and local levels toward people with disabilities? How will these cuts affect your child? What do you feel is the reason for these cuts?


How open, responsive, and accepting to people with disabilities were you before your child was diagnosed as having a disability? What was your belief toward people with handicaps before your child was born?


How would you have felt when you were a teenager if you knew then that you would have a child with a disability? How would you have treated such people then, knowing what you know now?


How close do you remain to the friends you had prior to your child's diagnosed problem? For the friends with whom you have become distant, what do you believe the reason for this is?


How do you feel about the ignorance, lack of information and understanding you confront whenever you speak about your child to your: parents, relatives, friends, doctors, neighbors, coworkers?


How much support do you have from your: church or synagogue, social clubs, old friends, neighbors, relatives, parents, in-laws, and spouse as you deal with your target child's concerns?


How often do you feel like you are under scrutiny or on stage when you bring your child into a public setting? How has having a child with a disability changed you, your attitudes, beliefs, values, and behavior toward others with disabilities? What does this teach you about the discrimination you and your child experience?


Step 2

Once you have identified whether or not you and your target child are experiencing discrimination, list the negative effects this discrimination is having on:

• your child

• your family

• your spouse

• your extended family

• you.


Step 3

Now that you have identified the negative effects of discrimination, identify the behavior needed to counteract such discrimination by:

• myself
• my spouse
• my children
• my target child
• my parents and in-laws
• my relatives
• my friends
• my neighbors
• my church or synagogue
• my target child's doctors
• my child's non-profit advocate agency
• my child's schools
• the state agencies serving children like mine
• the professionals involved with my target child and other children like mine.


Step 4

Now that you have identified a set of new behavior traits to be displayed by all those involved with your child, consider an action plan. This personal action plan will describe your reactions in the future to any real or perceived discrimination against you and/or your target child. Develop this plan in your journal:


My Anti-Discrimination Plan

I will watch myself react to the following people over the next three months to determine whether or not I am reacting to discrimination from them:


I will instruct these people with appropriate literature and verbal instruction about my child's disability, letting them know the following facts to reduce their ignorance, apathy, and stereotypic behavior:


I will develop three standard responses to strangers' questions about my child's problems. They will be:


I will try the following new behavior patterns in the next 12 months to deal with discrimination against my child and me:


I will assess the level of discrimination I am experiencing at the end of 12 months by looking at the following variables:

• How isolated I feel
• How accepted my child is by others
• How readily available services are to my child
• How freely I am able to tell people about my child
• How my child is feeling about him/herself.


Step 5

If you or your spouse have problems in planning or implementing a plan of action to counteract discrimination, return to Step 1 and begin again. is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., Email: ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D. Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.

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As parents of children with special needs you need to be aware of the impact of discrimination in the life of your children on the autism spectrum