Whenever you feel like you can’t go on, you reach out to your support system. The people who are going to be there for you, and you for them, are what make life worth living. Your friends and family back you up when you feel like you don’t know where to turn. Family and friends are everything: They are our support systems, our lifelines, and our refuge when life becomes too hard to bear. Whenever we are struggling, we want to share those struggles with them. Even if they don’t understand what is happening, they will do what is necessary to give you what you need, because that is what people who care for each other do. That’s what you’re going to need following an Autism Spectrum Disorder (ASD) diagnosis.
Usually, by the time your child receives an ASD diagnosis, you have been frustrated and confused about how to best help them. You may feel overwhelming relief that finally you have a solution to the problems you all have been having. You may also feel sad that your child was suffering for so long.
Learning that your child has been diagnosed with autism is a powerful moment in your life. Suddenly your life may feel very different from what you expected it to be. You worry first about your child and what it will mean for his or her life experiences. You worry about how you and your family will adjust to this in the years ahead. You worry about the day-to-day challenges of caring for your child with autism.
This is an important turning point in your life as well as the lives of your child and other family members. Getting emotional support and factual information to help you cope and promote a positive future for your child and family will be critical during this period.
Related: 100 Day Kit for School Age Children
Common Reactions to the Diagnosis
It is important to note each family’s reaction to the diagnosis will be different depending on many factors. The list of “Common Reactions” is meant to be an overview of feelings that families may or may not experience.
When a child is diagnosed with autism, parents and other family members frequently experience a range of uncomfortable emotions that are considered a grief reaction. In her book On Grief and Grieving, Dr. Elisabeth Kubler-Ross describes stages or types of grief reactions that make sense of what most people experience. She is careful to point out that we may move randomly between the stages although there tends to be a clear progression toward resolution:
Shock: “I can’t remember how I drove home after hearing the diagnosis for the first time.” “How can this be happening to my child?” Immediately after the diagnosis you may feel stunned. The reality of the diagnosis may be so overwhelming that you may feel confused and unable to accept it.
Sadness or Grief: “I have no energy.” “I can’t do the things I normally do for my family.” “I find myself crying a lot.” “I feel overwhelmed by sadness.” Many parents mourn some of the hopes and dreams they held for their child before they are able to move on. There will probably be times when you feel extremely sad. It is important to remember that there is a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable.
Anger: “We didn’t deserve this.” “I am so angry this is happening to those I love.” “I wish my neighbor would stay out of my business.” Anger is a natural part of the grieving process, and you may find that it’s directed at those closest to you – your child, your spouse, or a close friend. Anger is a healthy and expected reaction to the feelings of loss and stress that come with your child’s diagnosis. Expressing your anger is natural and at times healthy.
Denial: “He will grow out of this.” “I can fix it.” You may go through periods of refusing to believe this is happening to your child. During this time, you may not be able to hear the facts as they relate to your child. Denial is a way of coping. It may be what gets you through a particularly difficult period. It is important to be aware that you may be experiencing denial, so that it doesn’t interfere with making good decisions about your child’s treatment.
Loneliness: “I have never felt so alone.” “I wish I had a friend who would understand my situation.” “It is so difficult to reach out to others.” You may feel isolated and lonely. These feelings come from a variety of sources when you experience a loss. Loneliness may also come from the fact that you simply don’t feel you have the time to contact friends or family for company. You may also feel that if you did reach out to others, they wouldn’t understand or be supportive.
Acceptance: “I feel we can get through this.” “My family will be okay.” Ultimately, you will likely feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
It’s easy to become overwhelmed with your emotions and concerns about what the future may hold. Painful emotions are natural. If you accept your reactions and acknowledge your feelings, you will be able to move forward and begin advocating for your child. Emotions are powerful. If you deny your feelings or ignore them, they will often surface in unpleasant ways.
Who better to vent that frustration to than your family? Here’s where it gets complicated. Friends and family don’t always understand what we are going through. ASD is still largely stigmatized and misunderstood. If we are going to have our friends and family’s support, we are going to need them to understand what we are going through, and in order to do that, you’re going to have some information available to them.
How do we tell our friends and families about an ASD diagnosis?
It is best to just be straightforward. Explain to them what the disorder is and what it is not. Give them the best information that you have. If you don’t know the answer to their questions, research it along with them. Don’t be afraid to provide them with literature if they ask for it, but don’t overwhelm them with information. One of the main things they are going to want to know is what you need from them, and in the beginning, you may not yet know what you need. Be honest about that, and let them know you appreciate their offer, and you’ll be reaching out to them for help.
What is Autism Spectrum Disorder?
When you first tell friends and family about your child’s ASD diagnosis, they are not going to understand what it means. Remember, there is still a lot of misinformation and confusion about the disorder. Try not to be offended if they ask questions that seem insulting; remember that those usually come from a lack of knowledge. If you are looking for a simple definition, try this one:
“Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees.”
The following information is provided by the Autism Speaks Parents Guide to Autism:
What Is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
People with autism have symptoms or difficulty in three areas:
- Social interaction
- Language as used for social communication
- Repetitive interests or behaviors
How Common is Autism?
Today, it is estimated that one in every 88 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 54 boys is diagnosed with autism.
What Causes Autism?
The simple answer is we don’t know. The vast majority of cases of autism are idiopathic, which means the cause is unknown. The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child’s development (before, during, or after birth) may also play a role in the development or final presentation of the disorder.
How Is ASD Treated?
There is no cure for ASD, and there is no one size fits all treatment for it. When you are treating an autism spectrum disorder, you are treating the symptoms. This could require a few different options. There are speech therapists, behavior therapists, and psychiatrists who can help. You may be administering medication for certain symptoms. The professionals are going to assist you with creating a treatment plan that will help your child to function to the best of their ability. ASD is going to affect your child’s life at home, and at school. There will be educational therapies and family therapies in order for your family to successfully support your child through learning to live life well with ASD.
HOW CAN YOU SUPPORT YOUR FAMILY MEMBER OR FRIEND?
When a child is first diagnosed with autism, parents often scramble to find appropriate autism services, doctors, schools and therapists. What we don’t always anticipate is that relationships with friends, family and neighbors often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.
So what happens when you find out that your friend, family member or neighbor has a child who has been diagnosed with autism? How can you help your friend? How can you help their child? There are many ways you can assist a friend from talking to offering a playdate. Here are 10 things you can do to help a family whose child has been diagnosed with autism:
#1 BEING THERE
It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. As a friend, you may not understand all the autism jargon, but moms and dads who have kids with autism often want to talk about their kids. What can happen, however, is that the diagnosis of autism pushes us and our kids into isolation. It isn’t like we want to be isolated, but we are sometimes so busy with autism related activities and therapy, it does not leave much time for anything else. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat the isolation.
#2 DISCUSSING AUTISM
To talk about autism or to not to talk about autism?…That is the question. The answer is “It depends.” Most parents who have kids on the spectrum are more than willing to talk about autism. But there are parents who do not want to disclose the diagnosis, talk about autism at all or how it affects their child. Some parents may be in denial about the diagnosis and will not even want to say the “A” word let alone discuss the topic. So if you are a friend, what do you do? Let your friend bring up the topic of autism, and do ask how the child is doing. Even if a friend does not use the “A” word, he/she will appreciate you asking how their child is doing in general… without ever discussing autism. If your friend is open about the diagnosis, showing interest in their child and the topic of autism is certainly appropriate. Because we never take progress for granted, parents who have kids with special needs are proud of their children’s smallest accomplishments. To know that friends care about our kids makes sharing these times all the more special.
#3 WHAT DOES A CHILD WITH AUTISM LOOK LIKE?
Seems like a strange question. But I know that there have been times when a person has met my son and then makes a comment such as, “He doesn’t seem like he has autism.” or “He doesn’t look like he has autism.” The interesting thing is that there is no “look” to autism. Yes, some of our kids may have similar behavioral or social characteristics, but they are all very different. So this is why if someone tells me they have experience in autism, that doesn’t mean they will know or understand my child. If you do know, watch or teach another child with autism, it is best not to compare what you know to the child you are meeting. Also, I would refrain from telling your friend about how you think autism should “look”. Being open to learning the hallmarks of autism is important, but learning about the individuality of each child who has autism is the best approach. Sometimes it is a difficult concept to explain to others how autism is different in each child. But as a parent, when your child has 10 friends with Aspergers, you can see easily how they are all very unique with their own talents and interests.
If you had asked me when Tyler was diagnosed at age 2 where he would be in 12 years, I could not have told you or predicted the outcome…nor could the doctors. Many times people will ask us, “What the prognosis?”, “Will he grow out of the autism?” or “Will he go to college?” The truth for many of us is that we don’t know our child’s prognosis, and the topic can be a sensitive subject. Because we don’t know what will happen, the future can be a scary, unknown. Unlike parents of typical children, who plan for college or vocational schooling, we often do not know where our kids will be academically, socially or behaviorally when they become young adults. Can we plan for the future? Yes, but we go into it accepting the unknown variables as we plan. Our child’s future may or may not include college or further schooling. We often don’t know whether our child will ever be independent enough to live on their own. We hope for independence, but the reality for the future may include living at a group home or our child may need to live with us for the rest of our lives. Many of us worry about what would happen to our child if something happened to us. This too, is difficult. So, if your friend brings up the topic of prognosis, then you should discuss it. But just be aware that some parents will not want to talk about this issue.
Lately there has been a lot of autism awareness stories in the news. As a parent of a child with autism, I do appreciate friends and family sending me information they read. If you have a friend who is open about discussing autism, sending something you read is a fine way to show you care. Just because we have a child with autism does not mean we necessarily know every latest thing that is going on in the autism world. The only caveat I would mention in this area is that parents don’t always agree about autism treatments or causes. As a result, parents sometimes react strongly to studies, articles, etc.. So my advise would be to go easy. If a friend seems receptive to new information, feel free to send it but never push too hard.
#6 PLAYDATES WITH FRIENDS
I can remember when my son was first diagnosed, and my friends also had children Tyler’s age. What my son really needed was to be around other typical children. However, some friends acted like somehow autism was contagious and did not want their child playing with mine. I can remember a good friend’s husband expressing his displeasure with my son and his autism. After that, I never went out of my way to get our kids together, because I felt her husband didn’t want my son around her children. It was a rude awakening about how some people accept our kids and some people clearly do not. So what can you do? If you have a friend who has a child with autism, invite her and her kids over for play time. Will it be typical playdate? Maybe yes…maybe no depending on the children. Even if the playdate is a little out of the ordinary, it will offer the kids with autism an opportunity to learn typical social behaviors/skills from other children. For the typical kids, the playdate may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families.
#7 PLAYDATES WITH NEIGHBORS
When it comes to autism, being a good neighbor means more than keeping your yard clean and sharing a cup of sugar. If you have a child the same age as your neighbor’s, invite them over for playtime. You may want to invite the parent and the child over for the playdate so you can learn how the autism affects individual child and how to help the kids play together. It is important to note that many children with autism have difficulty creating and maintaining friendships, engaging in conversation and/or working within a group of children. This means that you may need to help facilitate the friendship and communication between your child and the child with autism. Also, many of our kids do better within a structured environment. Creating a well organized playdate with specific activities may help both kids enjoy their time.
#8 HELP WITH RESPITE
Whether the child is a toddler, adolescent or adult with autism, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion. However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. For example, I could easily find a teen babysitter in our neighborhood to watch my 4 years old, neurotypical daughter. But when my son with autism was her age, there was no way an untrained teenager would have been able to babysit him. My son only spoke a few words at the time and had many behavioral issues, so I only could trust my parents or another adult to watch him. So what does this mean if you are a friend or family member? An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with autism would be great. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.
#9 DON’T JUDGE
Whether it is a disapproving stare in a grocery store or comments from a family member about how we need to “better discipline our child”, most parents who have a child with autism been subject to judgment from others. Considering that we live our life in a fishbowl, with countless therapists in our home and never ending doctors appointments, we often grow weary of “advice” from those who do not have a child with autism. No matter how much you think your criticism is constructive, be aware that expressing it may easily break off or damage your relationship. Until you walk a mile in our shoes, you will never know what is like to have a child with autism. Most of us instinctively know that we should not judge others, but it can happen easily. And once it happens, it may be hard to reverse the damage.
Some parents, like me, are very open about talking about their children and the diagnosis. But some parents may not want to discuss autism except perhaps with a close friend or family member. And on the far end of the acceptance scale, some parents may be in denial about the diagnosis and won’t discuss the issue with anyone. But regardless of how much we discuss our kids or autism, we do expect confidentiality. Just because we open up to a friend does not mean we want our friends or family telling others about our children or any issues we are having at the moment. Confidentiality is especially important to a parent who has chosen not to disclose their child’s diagnosis to others . While it seems like common sense not to gossip about other people’s children, it is worth mentioning that if we tell you something, please keep it in confidence unless you have the permission of the parent to share this information with others.
THE BOTTOM LINE
In your lifetime, you will probably know more people and families affected by autism. You can choose be part of the solution by helping support a friend, family member or neighbor. Take the time to learn not just about autism, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help children with autism by being a friend too. If there is one thing I learned about friendship after my son was diagnosed with autism, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by autism is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well.
Related: A Grandparent’s Guide to Autism
How Can Grandparents Help?
After your grandchild is diagnosed with autism, you may feel unsure of how to help. It is likely that the supports your grandchild with autism needs may differ from those of your other grandchildren. Your relationship may be different but it will be equally as special and rewarding.
Be an active part of your grandchild’s life. If possible, carve out special time for your grandchild on a regular schedule. Children with autism do well with predictable and consistent schedules. Try to find activities that you can do together that are structured and do them regularly. Ask the parents about your grandchild’s favorite activities, ones that he or she enjoys and doesn’t get frustrated with.
- Ask if you can babysit your grandchild for a few hours, or overnight, so that the parents can get a break or enjoy some alone time with their spouse.
- If your live at a distance or are not comfortable babysitting your grandchild, you may want to offer to pay for respite services if possible.
- Educate yourself and your extended family about autism. Attend seminars, read books, call or email your family to get frequent updates on your grandchild’s progress.
- Become active in your grandchild’s treatment and development. If you live nearby, offer to accompany your grandchild to his or her therapy appointments to observe these sessions and learn effective techniques for interacting with your grandchild.
- The Grandparent Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild with autism.
Related: Autism Speaks
Related: National Autism Society
As you and your child are learning, so will your family. That is going to require some flexibility on their part, and yours. Remember that many of us are not educated on what autism is or what it means for your child. Everyone is going to need patience and love to get through this. Find a way to keep everyone up to date on the latest therapies and techniques you are trying. Ask for extra patience in an area where your child has been struggling lately. This is the challenge of telling your friends and family, that they may not always understand. Some people think that the problems that accompany ASD can be solved through discipline. Although there is nothing wrong with discipline and structure for anyone, the normal route to get there might not be the correct one for your ASD child. Be certain to be understanding, but direct with everyone to whom your child is entrusted: they will have to follow the rules of care, or else their time with your child won’t be enjoyable for anyone.
You have been struggling for a long time, but now you have finally come to a place where you won’t be doing it alone. An ASD diagnosis is one that will change your family, the way you discipline and the way you structure your home forever. This is not a bad thing, it is just different. Your friends and family are going to be there for you and help you through the changes you will have to make. Though you may have a few bumps in the road, once you tell them about your child’s ASD diagnosis, they will learn what you need and how to help.
Remember that their child is perfect just the way they are. There is nothing “wrong” with your child and you, as a parent, didn’t do anything wrong. ASD is a disorder with learning (though many ASD children excel in math & science) and social challenges, however, early intervention and therapy are key for self-coping methods and to help with life skills. A diagnosis can be heartbreaking and overwhelming, however, your child is still your child. This is still the same child you loved and cared for all their lives. Loving a child with ASD means that as parents, you will see and interact with your environment differently – you will now engage with the world in the best way possible for the needs of your child. Your perception will change and there will still be many moments of happiness, love and pure joy. Embrace the challenges and triumphs because your child needs you and YOU need them!
Joscelyn, Owner of Mami of Multiples & Mami Innovative Media
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