Helping Other Understand the One You Love

By Lisa Simmons

You are walking through the shopping mall or buying groceries with your family – suddenly you are approached by a stranger who either stares; pointedly looks away or asks you a point blank question – “What’s wrong with your child?”

Their looks and their actions show a lack of understanding and a lack of tolerance for anything different from them selves.

How do you respond? With righteous anger or compassion?

You will almost certainly feel the anger on behalf of your child and family, but giving in to it will leave you drained and frustrated.

And what if the person who doesn’t understand is actually part of your immediate or extended family? This can cause even deeper emotional wounds.

I want to encourage you to do all that you can to respond with compassion in these situations. You have started on a journey and so have they. They just don’t know it yet!

Make your goals (A) awareness, (E) education, and (AC) acceptance – usually in that order.

The Definition of Disability Awareness: Disability awareness, or in this case autism awareness is helping someone make the leap from confusion and fear to acceptance and understanding. Sometimes that leap can be made quickly and sometimes it only happens with lots of encouragement and persistence.

We will start at home and walk through ways to use this process for yourself, your spouse, and your extended family members. Then we will move on to practical ways to move through this process with your child, your child’s classmates or peers; and your community at large (including those aggravating strangers at the mall).

#1. Start with yourself

If your child has received his/her diagnosis recently, then the first person you need to escort through this process is yourself.

(A) Listen to the stories of other parents raising children with autism spectrum disorders – do you see yourself and your child? Try not to focus on the stories that scare you. Instead, tuck away helpful hints and jot down names of parents you may want to talk with more, down the road.

(E) Do your homework. Do the symptoms ring true for your child? Do you believe that this is the correct diagnosis for your child? Do you understand both the challenges that lie ahead AND the resources that can offer hope and support to your family?

(AC) Apply what you have learned – begin to build the network of support that your special child needs (medical treatments, education strategies, personal support). Click here to read more ideas on how to identify your own personal network of support.

2. Support your spouse

Often the spouse not involved in primary childcare has more difficulty accepting a diagnosis of autism. The may withdrawn into roles outside the family or even withdraw from the family completely. It important to do all you can to help your spouse reach acceptance. Their active participation will make your efforts as a parent, caregiver, and advocate much more effective. To get started, think about how your spouse makes decision and help them find the kind of input they need to reach acceptance.

(A) Share the realities of your day. Encourage your spouse to spend time alone with your child and experience his/her care first hand. If verbal discussions become highly charged, try writing a journal or a letter and sharing that.

(E) If your spouse responds to facts – have him/her complete a signs and symptoms checklist for your child. Seeing the results in black & white can be an eye-opening experience. If they give greater weight to the voice of experts – find them a parent book on autism for them to read or take them along to a therapy session. Do they need to process in private or in a group? Attending an autism conference where they can meet others living your reality can give them the chance to connect with other spouses while utilizing online options like teleclasses and multi-media presentations can provide all the information of a conference in a much more private forum. The key is to find what works for your particular spouse and connect them with the necessary information.

(AC) Involve your spouse as much as possible. Your advocacy efforts will be strongest if you attend school meetings and medical appointments together. This allows you both to help establish priorities, contribute to the “the plan of action”, and have ample opportunity to ask questions. It also ensures that the support you offer your child at home will be a united effort.

3. Extended Family Members

Loved ones who don’t see your family frequently may find it easier to see your child’s behavioral symptoms as a reflection on your parenting rather than the special needs that they are. Accept that this is a coping mechanism, an attempt to block out information they don’t want to receive.

(A) Let family members know about your child’s diagnosis as soon as possible, often writing a letter makes a more lasting impression than a spoken conversation. Chances are this will be their first introduction to the subject of autism so try to use your own homework to explain it as simply as possible in words that are familiar.

(E) Not every family member will be open to knowing more, but encourage any that show signs of interest. Loan them your resource books to read; spend time together with your child or write out a typical day so they can understand the reality of your child’s needs. Print out family-friendly information that you find online and let them learn a little at a time.

(AC) Talk about ways individual family members can support your family (coming with you to meetings, babysitting so you can go to a support group or out to dinner, spending time with sibling who may be feeling overlooked, etc.) By letting them do just a few non-threatening tasks and showing your appreciate you both benefit and your family bond is strengthened.

Although it may feel counter productive to start at home when strangers on the street are the ones causing you sleepless nights, I do this for a purpose. #1 – it gives you a chance to increase your personal circle of support and #2 – if gives you lots of practice talking about your child’s diagnosis so that you can fine-tune your explanation and figure out how to say it a way that is calm, clear, and concise.

Now on to those tougher conversations …….

Your Child
Your Child’s Peer Group
Your Community (including those aggravating strangers at the mall).

Remember your goals:

(A) Awareness

(E) Education

(AC) acceptance

4. Your Child

Parents go through a range of emotions when a child is diagnosed with autism. Your child also needs to be given information about their diagnosis and support for understanding and coping with this new information. Adults on the spectrum who are successful have learned who they are, and accept and use that information to help themselves become the best they can be in life.

Does the idea of discussing Autism or Asperger Syndrome with your child seem scary or even silly? Lots of parents put this task off. They fear their child won’t understand or that hearing the information will make their child feel bad. Chances are your child won’t understand what you telling them the first time, but a journey can’t start without that first step. Your child’s diagnosis will affect his/her entire life. Problems will occur and their road will have challenges. But correct information about their diagnosis and what their differences are will gave them a better chance of being successful.

When: There is no exact age or “right time” to tell a child about their diagnosis. You know your child best and you will need to make a decision based on his/her personality, abilities and social awareness. Look for signs that the child is ready for information. Some children will actually ask, “What is wrong with me?,” “Why can’t I be like everybody else?,” or even “What is wrong with everyone?” These types of questions are certainly a clear indication. Others, however, may have similar thoughts and not be able to express them. The bottom line – try to offer your explanation before your child has lots of negative experience related to his/her diagnosis. Just as early intervention is the key to effective treatment. Early communication is the key to healthy self-esteem and self-acceptance.

So, when you’re ready….

Set a positive tone and focus on uniqueness as the quality that makes each of us special. Talk about the qualities of different friends and family members, how each has their own likes and dislikes, strengths and weaknesses, and physical characteristics. This makes uniqueness just a matter of course. It also makes it easier to talk about differences related to your child’s diagnosis.

Practical tools:

(A) When your child is young read simple stories about autism or other children who have autism spectrum disorders. A book like “My Friend with Autism” by Beverly Bishop is a great choice. It is a coloring book designed to help children ages 4-8 understand autism and Asperger Syndrome. It was created by the mother of a young man with autism and is highly informative. Best of all, it is simple enough for young children to understand and short enough to keep a younger readers’ attention. For an older child try, “Asperger’s: What Does It Mean to Me?” by Catherine Faherty. It comes in a workbook format that provides activities that help explain an autism spectrum diagnosis as well as make the information more child specific and concrete. The worksheets can be completed together by the child with you as their trusted adult partner.

(E) Check with your state Parent Training & Information Center or your local autism support group, many have a library of videos that can be checked out for viewing by your family.

(AC) Talk with your child one-on-one. If your child is very visual, videotape them and watch the video together as a conversation starter. Consider your child’s ability to process information and try to decide on what and how to give them information. Remember it doesn’t all have to happen all in one big session. A series of conversations may meet both your needs better.

5. Your Child’s Classmates
Just as you come to rely on your co-workers as an extended family so your child will see his/her classmates at school as a primary source of interaction and support. Time spent ensuring that this is group is well informed and supportive when they are young, will make the road easier as your child grows.

(A) Volunteer to do an autism awareness presentation for your child’s class as soon as school starts. Use strategies and conversations you have already developed with family and friends to explain this complex diagnosis in child-friendly language. The Center for Disease Control & Prevention has a Kids Quest of Kid-Friendly Facts that may be helpful. Be sure to personalize your information to your child and cover critical issues like communicating with your child and understanding his/her social signals.

(E) Work with your child’s teacher to integrate autism awareness into the class’s regular curriculum through stories, empathy building activities, and reports.

(AC) Discuss ways to encourage peer friendships for your child through the use of Peer mentors or friendship groups such as a Circle of Friends. Add these items to your child’s individualized education program (IEP) to make them a priority. And be sure to focus attention on your child’s social responses as well. Utilizing techniques such as social stories, social circles, and software programs designed to help children with spectrum disorders recognize and interpret facial expressions can all help your child feel more comfortable and confident in social situations.

6. Your Community at Large

When it comes to the community at large, you may have great difficulty moving any particular individual through the entire process. Instead focus on building awareness. Plant many seeds and hope for a beautiful garden of wildflowers.

Volunteer to present to community organizations. Talk about your family’s experience and about your child’s particular diagnosis. Most community members will have little or no experience with autism and you can explain both the joys and the challenges in a uniquely personal way. If there is a way the organization can help, don’t be shy about suggesting it. Most civic organizations are constantly looking for ways to improve the community and are very open to ideas.
Do regular autism awareness events/activities with your support group. Frequently acting as a group of parents will have a larger impact than simply acting alone. In the United States, April is recognized as National Autism Awareness Month, but for a larger impact, consider working with your group to do small activities throughout the year. Whether you are sharing information or doing a fund-raising event for autism research – let your voice be heard in your community.
Write letters to the editor giving your perspective on special needs issues. Many sectors in your community will impact your child with autism (childcare, healthcare, education, employment). A simple, personal letter can have great impact. Don’t allow your child’s options to be limited because you didn’t speak out on issues that were close to your heart.
Remember that calm, clear, concise message you’ve been working on? Consider that your “Elevator Speech” and have it polished and ready for anyone who approaches you on the street. Your goal: 30 seconds
Educational cards – if you aren’t sure you can talk calmly when someone has spoken rudely to you or your child, create a set of educational cards. This allows you to “do your part” for raising awareness by simply handing the individual one card and walking away. Your local chapter of the Autism Society of America may have cards that you can purchase or you can print your own with a personal message. They are usually about the size of a business card.

And what about that stranger on the street? Try these quick solutions:

The one liner, “Kids come in all shapes and sizes”.
Focus on your child – if the stranger simply stares, walk away and count 5 small, amazing accomplishments that your child has made. Genuine pride and delight will soon put the smile back on your face.

© 2005, Lisa Simmons. Lisa is the creator of the Ideal Lives Online Advocacy & Inclusion Center and author of the special report, “Disability Awareness: Special Kids Don’t Have to Feel Left Out”.

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