So the tests are over, the doctor or therapist sits down with you, and she gives the news: it’s autism. How do you handle the diagnosis? This article gives coping tips for both autistic people and their parents or guardians.
Forget everything that you thought you knew about autism. Television,books, documentaries, and other media rarely depict autistic people correctly. Even so, people with autism vary widely. Each person is impacted, gifted, impaired, or changed by being autistic in a unique way. If you’ve met one person on the autism spectrum, you’ve met just one person on the autism spectrum.
Now that you know nothing about autism, research it. Read books andarticles written by autistic people. Learn about what makes them different, what misconceptions people have, and what therapies are helpful. Autistic people can paint accurate pictures of what life is like for autistic people.
Know that many successful people are autistic. Autistic people write novels, run organizations, create art, music, athletes, and make contributions to science and mathematics.You can have a decent career, just like people without autism.
Make autistic friends. Autistic friends, along with being cool and fun-loving people in general, are crucial to your coping skills. You can find them in person, through autism advocacy groups, or online. Here are a few ways in which autistic friends are helpful.
They are like-minded. You can bond with other autistic people in a way that just isn’t possible with neurotypicals.
They can share coping skills and social strategies. Autistic people have firsthand experience with what works and what doesn’t.
They face challenges together with you. Tackling a neurotypical world feels a lot less overwhelming when you have a fellow autistic person by your side.
They demonstrate firsthand that it’s possible to be awesome and autistic. With all the negative discourse on autism, it’s easy to forget this.
They accept you for who you are.
Take time to cope with your emotions, and recognize the challenges you will face. People will misunderstand you. Things other people find simple might be terribly difficult for you. Not all autistic people are artistic or mathematical savants. Sometimes, it’s going to be difficult to be autistic, and that is a reality. It is okay to feel confused or unhappy about your diagnosis, and to recognize that your disability will affect you. An autism diagnosis does not change who you are, it helps to clarify a part of you. An accurate diagnosis is meant to help you and others understand how you are different, and how to meet your needs. You are different because your mind works differently. You are not suddenly a new or different person because of a diagnosis; autism apparently is inborn.
Individuals and families can have many different reactions to a diagnosis. It can be frightening, because it is something out of the usual. It can be relief, as it may explain things that were a mystery before. It can be confusing, as people often have a poor understanding of autism. It can also be more than one emotion.
Check out the autistic community online. The autistic community is a welcoming place that provides a positive space to discuss autism. Many autistic people congregate under the hashtags #askanautistic and #actuallyautistic (since family members have mostly taken over the autism tag).
If you’re having a rough day or are feeling down about your autism, go to the autistic community. They write many things that help.
Consider getting involved in advocacy groups. Some autistic and other disabled people dedicate their time to fighting stigma and shame.
Accept that it’s okay to be different. Neurological differences don’t make you any less of a person. They don’t change your intelligence, your dedication, or your compassion.
Additional Tips for Parents and Caregivers
Know that your child can see your reaction. If you act like the diagnosisis the end of the world, your child will see this and blame themselves. While it’s natural to feel surprised and confused, remember that most of the bad things you have heard about autism are negative stereotypes. Don’t pass this negative view onto your child.
It’s okay to feel some initial sadness that your child won’t be “normal,” but it’s not okay to try to make everything “normal.” It will take time to adjust to the fact that your child is disabled, and it’s natural to worry about them. But autistic children, while different, are still children who may have their own surprising gifts. These will become clearer and clearer as they grow up.
Remember that most of the bad things you have heard about autism are negative stereotypes. These have carried over from past negative perceptions, when autistic people where dismissed and forced into damaging normalization programs. While some of this continues, we have come a long way, and knowledge and understanding have greatly improved the life of autistic people. Don’t
Explain to your child that your job, as a parent, is to help them be their best.
Support your child. They are probably feeling lost and confused, and a little extra support will help them understand that your love for them hasn’t change. How you decide to do so will depend on the child: hugging them, telling them how much you love them, spending time playing blocks on the floor, et cetera.
Accept help. Parenting is an exhausting job already, and it can be especially difficult when your child has special needs. You don’t need to work alone. Find appropriate resources as early as possible, to help your child learn how to communicate well and have a fulfilling life. Having supports in the community will greatly enhance your child’s capabilities, as well as your own well-being and happiness.
Don’t forget your own needs! See if there’s a support group for parents that you can join, or a group that provides parenting advice catering to special needs. Your mental and emotional health are important both to your child and to yourself.
Choose support groups carefully. Some parent groups provide support and understanding, but others trumpet martyrdom and paint autism as the enemy. The latter will hurt your child. Carefully research a group to ensure that it is inclusive of autistic people, and that the autistic community supports it instead of considering it a hate group.
Make autistic friends. Along with being cool and funny, autistic adultswill help you visualize what your child will be like as an adult. They will also help your child’s self-esteem by showing that autistic adults exist and are good people. They may also be able to offer insights into autism that no neurotypical therapist could.
Accept that your child is going to be different. She may flap her hands in grocery stores. He may use sign language instead of speaking. However, this does not mean that your child will be incapable of loving you, finding fulfillment, and making a meaningful contribution to the world. Recognize that “different” is no lesser than “normal,” and that it’s okay if your child has special needs.
Teach your child as much about autism as is age-appropriate. (Your research from before will help you.) Look for books written by and about autistic people.
It’s better to tell the child before they enter grade school, as being surrounded by their peers will quickly signal to them—and to their classmates—that they are different. If they don’t know that they are autistic, they may feel confused about why they are unlike everyone else.
Since accurate media about autism is hard to find, you can also point out characters who seem to display some characteristics (without an official diagnosis). For example, “Do you see how Twilight Sparkle uses the book to tell her how to hold a sleepover, and that she wants to help her friends but sometimes doesn’t realize how they feel? I think she’s kind of autistic, just like you!” Say this in a kind or goofy way, so your child knows that it’s okay to be autistic. A few autistic role models (official or not) may greatly improve your child’s self-esteem.
Work together with your child to treat symptoms. Treat your child like an active participant, instead of the object of a project. Your child can help define and work towards your goals.
Brainstorm coping strategies with your child.
When your child says “no,” don’t force compliance. This is damaging to your child, and they may be unable to say “no” when they really need to, such as if someone tries to abuse them. If you listen and respond with respect when your child says no, they will learn boundary-setting skills and ask for help when they need it.
Learn about respectful parenting and inclusive language. Assuming that your child is competent and trying hard will help them feel safe and behave well. Pushing them too hard will only hurt them.
Acknowledge that your child is different, and difference is okay. They are loved and valued, autism and all. Disability does not lessen human dignity.
Put your child’s happiness first. It doesn’t matter if your child spins in public. It doesn’t matter if your child doesn’t talk. It does not matter if your child has a ridiculously focused interest in bridges. What makes us human isn’t just what’s “normal.” It’s our kindness and love that matters most of all.
Avoid reading about damaging parent-run organizations late at night. The dehumanizing rhetoric, abuse, and child murder issues may disrupt your sleep.
Sources and Citations
“The Things You Want People To Do To Your Kids” from RadicalNeurodivergence Speaking.
Autism Women’s Network
Autism Self-Advocacy Network (ASAN)
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