So the tests are over, the doctor or therapist sits down with you, and you get the news: it's autism. How do you handle the diagnosis? This article gives coping tips for both autistic people and their loved ones.
Method 1 - Understanding Autism
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→ Forget everything that you thought you knew about autism. Television, books, documentaries, and other media rarely depict autistic people correctly. Even so, autistic people vary widely. Each person is impacted, gifted, or impaired 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.
→ There are a lot of very negative stereotypes about autism, which can be scary, especially to people who don't understand autism well. Remember that lots of the things you have heard are worst-case scenarios, things that can be helped and improved over time, or blatant lies.
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→ Now that you know nothing about autism, research it. Read books and articles 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.
→ Remember, autistic people are a very diverse group (just like non-autistics). You will read from people with a variety of abilities, needs, and traits.
→ Don't only read from non-autistic people's descriptions of autism. Go directly to the source. Focus on things written by autistics, and use things written by loved ones and professionals as supplementary material.
→ Try starting with wikiHow's autism articles.
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→ Stay away from negativity. There are some toxic anti-autism groups that paint autism as a defect or a demon, and say horrible things about autistic people. This isn't kind, and isn't true of you or your loved one. Avoid the traps of pity or blame, and walk away from anything that treats autistic people like they are inferior.
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→ Know that many successful people are autistic. Autistic people write novels, run organizations, create art, compose music, become athletes, and make contributions to science and mathematics. Being autistic does not mean being incapable, and many autistic people are able to make positive contributions to the world. Many autistic people can, now or someday...
→ Learn many new skills they don't have yet
→ Have a successful career
→ Live independently
→ Make friends
→ Enjoy hobbies and passions
→ Find a lifestyle and routine that suits them
→ Have happy lives, even if they can't do any of the above things
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→ Keep in mind that every autistic person is unique. Autistic people, as a group, are extremely diverse. One family's story may look dramatically different from another's. No two autistic people are alike in terms of abilities, needs, or personality. It's great to learn from a diverse group of people, without assuming that your or your family's future will be exactly like one source.
→ What is helpful for one person may be unhelpful for another. What's true about one autistic person may be untrue about another. There is no one-size-fits-all way to help yourself or a loved one. You just need to try things, use common sense, and figure out what works.
→ Around 1 in 59 people are autistic. Thus, you've probably met quite a few autistic people, without necessarily knowing it. They were all probably very different from each other, too.
Method 2 - Adjusting Your Attitude
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→ Give yourself time to process. Especially if the diagnosis came as a surprise to you, it may take you a while to sort out your feelings. Don't expect to understand everything right away, or to know how to react right now. You're allowed to be confused. Give yourself time and space to work through your feelings.
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→ Avoid making or believing scary predictions about the future. Stereotypes and misunderstandings abound. If you or your loved one is deemed "low-functioning," you may be told that a dim future is certain. That's just not true. Nobody knows what the future is, and many good things could happen.
→ Autistic children who have major developmental delays might start learning much faster later on, especially once they have a reliable form of communication and a supportive environment. It's very normal for autistics to be late bloomers.
→ Beware any quack who says "use my treatment or your loved one is doomed." It doesn't matter how much much expertise they claim. A developmental delay is not a developmental halt.
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→ Recognize the challenges you or your loved one is facing. People will misunderstand. Things other people find simple might be terribly difficult for you or your loved one. Your life won't be like the picture-perfect "inspirational" photos of disabled people doing exceptional things. Sometimes, it's difficult to be autistic. It is okay to feel confused or unhappy about the diagnosis, and to recognize that disability makes life harder in some ways.
→ You or your loved one is not suddenly a new or different person because of a diagnosis; autism is thought to be inborn. An autism diagnosis does not change who someone is; the person was always autistic. A diagnosis just clarifies things, explaining quirks and offering ideas on how to meet a person's needs.
→ Individuals and families can have many different reactions to a diagnosis. It can be frightening, because it is something unusual. It can be a relief, as it may explain things that were a mystery before. It can be confusing, as people often have a poor understanding of autism. A mix of emotions is typical, and it will be okay.
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→ Accept that it's okay to be different. Neurological differences don't make you or your loved one any less of a person. They don't change a person's strength, skill, dedication, or compassion. People can be wonderful and autistic at the same time.
Method 3 - Reaching Out
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→ Talk to supportive people in your life. You may be experiencing a lot of different emotions, and it's normal to be confused or overwhelmed, especially if you're not very familiar with autism. Talk to a good listener about what you are going through.
→ If you're talking about a loved one, be mindful of whether the person is within earshot. You don't want to confess your darkest feelings only for the autistic person in the next room to hear everything. Try leaving the house to talk in private.
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→ 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 autistic spaces 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 non-autistics.
→ They can share coping skills and social strategies. Autistic people have firsthand experience with what works and what doesn't. If you don't know what's going wrong, they may have some good insights.
→ They face challenges together. Tackling difficulties in a neurotypical world feels a lot less overwhelming when you have someone else who knows what it's like.
→ 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 or your loved one, full stop. There's no judgment.
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→ 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 ableist family members have mostly taken over the autism tag).
→ If you're having a rough day or are feeling down about autism-related problems, 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. Find a group that is run partially or completely by autistic people.
→ Non-autistics are welcome to ask questions under #askanautistic, and read from #actuallyautistic (although it is rude to post in it if you are not actually autistic).
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→ Consider counseling if you're struggling to cope. If you're doing your best but you still can't manage what's going on, or you're dealing with a lot of negative people and you are struggling to handle it, you might need a little extra guidance. Look for someone who is understanding, and autism-friendly.
→ If you are feeling a lot of negativity about a loved one's diagnosis, and you think that your struggles might be affecting your loved one, get help now. You owe it to both yourself and your loved one.
→ Sadly, not all counselors are understanding about autism. Some buy into the pity narrative and act like families are victims of the autistic person. Stay away from any counselor who treats you or your loved one like a burden.
Method 4 - Helping a Loved One
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→ Take a deep breath. It's natural to be worried, confused, and uncertain. A diagnosis is big news. Keep in mind that many negative things you have heard about autism are only one piece of the picture, and big groups tend to use scare tactics to raise money. It may be difficult at times, but it's going to be okay. Your child can have a happy life.
→ Autistic children, while different, are still children who have their own gifts and skills. These will become clearer and clearer as they grow up. Your child has a lot to offer.
→ 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 were institutionalized, tortured, bullied, and treated very terribly. While some of this continues, society come a long way, and knowledge and understanding have greatly improved the lives of autistic people.
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→ Know that your loved one can see your reaction. If you act like the diagnosis is the end of the world, they will see this and blame themselves. Save your most vulnerable moments for when your loved one is not around, and make it clear to them that you are not disappointed or burdened by them. Don't pass a negative view of autism onto your child.
→ Autistic people with more accepting environments tend to have better mental health outcomes.
→ Your job, as a parent, is to help them be their best. That means you need to learn how to get past emotional hang-ups, readjust your expectations, educate yourself on autism, and advocate for your child.
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→ Support your loved one. They are probably feeling lost and confused too, and a little extra support will help them understand that your love for them hasn't changed. How you decide to do so will depend on the person: hugging them, telling them how much you love them, spending plenty of time playing blocks on the floor, etc.
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→ Seek and accept help. Parenting is an exhausting job already, and it can be especially difficult when you are trying to find resources for a disabled child. You don't need to do this 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.
→ Look for therapies that will increase your child's coping abilities, and give them new skills. Avoid normalization or compliance therapies, as these will harm your child. Also, stay away from fad "treatments" without sound medical backing, as there are a lot of scams related to autism.
→ 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.
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→ Choose support groups carefully. Some parent groups provide support and understanding, but others trumpet martyrdom and paint autism as the enemy. The latter will scare you, and 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 protesting at its doors.
→ Are autistic people included? For example, do you see autistic parents of autistic children there?
→ How do people talk about their loved ones? Are the autistic people valued, or demonized?
→ Is the focus on fighting autism, or do they make peace with autism while seeking to help?
→ Would you be okay with people talking about non-autistic children this way?
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→ Talk to autistic adults for advice and support. Along with being good friends, autistic adults will 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 non-autistic therapist could.
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→ Accept that your loved one is going to be different. They may flap their hands in grocery stores. They may use sign language instead of speaking. They may speak in an idiosyncratic way, and you might have to try harder to understand them. However, this does not mean that they 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 loved one has special needs.
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→ Teach your loved one about autism. (Your research from before will help you.) Look for books written by and about autistic people.
→ Ideally, young children should know 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 and accepting 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 she loves computers and asks her friends to understand how others are feeling? I think she's kind of autistic, just like you!" Say this with a positive tone of voice, 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.
→ Older children and teens may benefit from reading articles on autism. You can direct them towards wikiHow articles such as Accept Your Autism or towards the autistic community online.
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→ Work together with your loved one to make their life easier. Treat them like an active participant, not the object of a project. Your child can help define and work towards your goals.
→ Brainstorm coping strategies with your child.
→ Be cautious about therapies. Therapies should be respectful and fun, and not based on normalization. Compliance therapies could hurt your child and leave them vulnerable to abuse. 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.
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→ Give yourself and your child a break. You do not need to put your child through 40 hours of therapy per week. You don't need to spend every minute hovering over them or micromanaging what they do. No one will die if your child learns to write a little late. Let your child be a child, and have time for relaxation and self-directed activity. Give yourself time to rest, relax, and stop obsessing over developmental timelines and "should"s and "shouldn't"s. It isn't good for your child, and it certainly isn't good for you.
→ If you find yourself getting too upset, stop. Take a deep breath. Say "I'm stressed and I need a break." Then take a minute to relax, ground yourself, and maybe use some of those coping skills that you want your child to learn. You don't need to have all the answers right away.
→ It's normal for autistic kids not to meet their milestones at the average times. Some milestones might come early, and some might come late. Throw out the standardized calendar, and instead focus on what your child can do, and on what they are ready to learn to do. Don't worry about what the next-door neighbor's kid is doing.
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→ Learn about respectful parenting, peaceful parenting, and inclusivity. Assuming that your loved one is competent and doing their best 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.
→ The autistic community encourages the following as inclusive language: identity-first language ("autistic person" instead of "person with autism"), avoidance of arbitrary functioning labels (high vs. low functioning), no demonization of autism, recognition that it is a lifelong disability (therapy can help with problems, but autism cannot be "fixed"), and avoiding pitying language (e.g. "so brave" or "suffers from autism").
Warnings
→ Be careful when reading about anti-autism groups like Autism Speaks. Some of the things you learn may be very upsetting and disturbing, and could make it hard to fall asleep. Be mindful of what you choose to read.
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