REACTING TO THE DIAGNOSIS
Even before an evaluation, some parents have a feeling that their child has autism. Other parents have no idea, and the diagnosis can be very unexpected. Either way when your child is diagnosed you may feel a range of emotions. For example, you may feel:
All of your feelings are valid. Give yourself time to process your feelings. Getting therapy and finding a support network can help you work through your emotions. At the same time, remember that you have the same unique child you did before the diagnosis. You just have more information about the way your child thinks, processes and experiences the world. Just because your child can or cannot do certain things right now does not mean they never will. Autistic people follow their own path and reach milestones at their own pace. The best thing you can do is continue loving and supporting your child, meeting them where they are, and finding the therapies and supports that will enable them to learn and grow.
Reacting to the diagnosis
No matter how you may feel about the diagnosis, concerns that many parents share are similar:
- Worrying about your child’s future
- Not knowing what to expect
- Feeling like you don’t know how to help
Your child needs you. You are the best person to provide them with the help, support and love they need. You don’t have to know everything about autism to be the person who knows your child best. Even if you don’t feel qualified, or you know nothing about autism, you can do this. It won’t always be easy, but there is a whole community of parents and people with autism who have walked this path.
If you find that sadness is interfering with your daily life or you have other symptoms of depression, consult your health care provider who can recommend treatment. These symptoms might include:
- Weight loss or gain
- Social withdrawal
- Sleep difficulties
- Low self-esteem
- Loss of interest in daily activities
While emotions vary across parents and family members, some might experience sadness at first. The time after an autism diagnosis can be challenging for all families.
Autism is a complex disorder. It may not only change the way that you look at your child, it may change the way you look at the world. Accepting the diagnosis simply means that you are ready to advocate for your child.
Parents, siblings and other family members may each react to the diagnosis in different ways and at different rates. Give yourself time to adjust. Be patient. It will take some time to understand your child’s autism and how you can best support them.
Keep in mind that having a child with autism will also help inspire you and provide you with a new outlook on life. As all parents do, you will teach your child life lessons, both big and small. But as your child grows, you will also learn equally valuable lessons from them, like the importance of understanding and acceptance of all people, regardless of their differences.
Strategies for support
As you move forward with your child and your family as a whole, the staff at the Mayo Clinic has come up with the following advice to help you on your journey:
Learn about the disorder. Just 15 years ago, many pediatricians hadn’t heard of autism. Now, there are numerous books and websites dedicated to the disorder. Do some research so that you better understand your child’s challenges and the range of services in your school district and state that may help.
Learn about your child. The signs and symptoms of autism vary for each child, and young children have a hard time explaining their behaviors and challenges. But, with time and patience, you’ll learn which situations and environments may cause problems for your child and which coping strategies work. Keeping a diary and looking for patterns may help.
Find a team of trusted professionals. You’ll need to make important decisions about your child’s education and treatment. Find a team of teachers and therapists who can help evaluate the options in your area and explain the federal regulations regarding children with disabilities.
Help others help your child. Most children with autism have no visible sign of disability, so you may need to alert coaches, relatives and other adults to your child’s special needs. Otherwise, a well-meaning coach may spend time lecturing your child on “looking at him while he’s talking” – something that can be very difficult for a child with autism.
Help your child turn his or her obsession into a passion. The tendency to fixate on a particular narrow topic is one of the hallmarks of autism andit can be annoying to those who must listen to incessant talk about the topic every day. But a consuming interest can also connect a child with autism to schoolwork and social activities. In some cases, kids with autism can even turn their childhood fascination into a career or profession.
Stages of autism
Dr. Stephen Shore, a professor of special education and Autism Speaks board member on the autism spectrum, talks about four stages of autism that lead toward meaningful and rewarding lives for individuals with autism. Every stage involves multiple steps, and everyone advances at their own pace.
Stage 1. Awareness You’re already in this stage as you’re reading this tool kit and becoming aware of your child’s diagnosis. For many years, advocacy groups have made big pushes for autism awareness. More than a decade later, many groups have felt they successfully achieved this stage by promoting awareness in many ways. By increasing awareness of autism spectrum disorder and the many different manifestations of this condition, there have been more conversations on the subject. This awareness has resulted in many autism diagnoses for those who were under diagnosed or even misdiagnosed over the years.
Stage 2. Acceptance Many organizations also strive to promote autism acceptance. This involves caring for autistic individuals in all their strengths and challenges and not trying to make a person into someone they are not. Acceptance also involves a respect for the differences that autism brings into the lives of everyone involved, as well as the full spectrum of autism. An important aspect of this stage is working with the characteristics of the autistic person rather than against.
Stage 3. Appreciation When working on appreciation, we can look at the gifts of those on the spectrum and moments others may never understand the significance of. How many people really take the time to cherish every day, appreciate our support networks, and look at our own resilience and the value of how far we have come? Our children with autism one day may go on to college, live by themselves or find their dream job after years of hard work and support. These are moments we appreciate more than others may ever understand. Autistic people are valued for who we are and the contributions we make to society.
Stage 4. Action This stage glues together the work done in the previous three, where we actively work with a person’s strengths and interests to help them live a life they want to have. Everyone has different goals in life, and a child’s goals may change as they grow up. Let’s put those skills and supports to use as we take action to help promote self-determination, self-advocacy, as well as making fulfilling and productive lives for autistic individuals the rule rather than the exception.
10 do's and don'ts after an autism diagnosis
This post is by Lisa Smith, mother of seven children, two with special needs. Her son Tate has autism. Lisa blogs about her experiences and can be found on Facebook at Quirks and Chaos or at quirks-and-chaos.blogspot.com.
Over 10 years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.
1. Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you.
2. Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.
3. Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.
4. Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.
5. Don’t let the autism diagnosis isolate you. Do reach out for help. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. There is a lot of camaraderie in the autism community. Reach out. We help each other.
6. Don’t let the autism diagnosis keep you from your other children. Do explain autism to your children and what it means to your family. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities that your child with autism needs.
7. Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Don’t let autism silence the laughter in your home.
8. Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. If, as your child ages, it becomes clear some of the things you imagined for the future will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.
9. Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.
10. Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.