Cope with an Autism Diagnosis

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.

Steps

Understanding Autism

  1. 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.
    • Stay away from Boycott Autism Speaks and other groups that use scare tactics as a fundraising technique. They tend to exaggerate the negatives and often don't have your best interests at heart.
  2. Now that you know nothing about autism, Understand Autism. 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 them. 
    • Look for autism-friendly communities online.[1]
    • 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. (Emma's Hope Book has a list of blogs and books written by autistic people, which is a good starting point.)
    • Try starting with wikiHow's Autism Spectrum.
  3. 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.
    • There's a growing community of people who believe that autism is a form of diversity—not a disorder.[2]
  4. Keep in mind that autistic people can be successful. Autistic people write novels, run organizations,[3] create art,[4] compose music,[5] become athletes,[6] and make contributions to science and mathematics.[7] 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
    • Develop career skills
    • Live partially or completely independently
    • Make friends
    • Enjoy hobbies and passions
    • Find a lifestyle and routine that suits them
    • Lead happy lives,[8] even if they can't do all or any of the above things
  5. 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.[9] Thus, you've probably met quite a few autistic people, without necessarily knowing it. They were all probably very different from each other, too.

Adjusting Your Attitude

  1. 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. After a diagnosis, people may feel...
    • Relieved to finally have an answer
    • Scared due to lack of knowledge, lack of support, or negative stereotypes
    • Sad because some past goals may be unrealistic
    • Happy to let go of self-blame, because autism is no one's fault
    • Excited by the possibility of finally getting support
    • Worried about the future
    • Confused about what this means
    • A mix of some or all of these
  2. 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 holds, and many good things could happen.
    • Autistic people usually are late bloomers.[10] They'll keep learning and growing throughout life.[11] They may start making big strides, especially once they are given proper means of communication, put in a comfortable environment, and surrounded by people who presume their competence.
    • Even professionals may jump to worst-case scenarios.[12] Take their words with a grain of salt.
    • Avoid Autism‐Related Scams tend to target frightened people (especially parents) and say "use my treatment or your loved one is doomed." That isn't realistic.[13] Don't make fear-based decisions, and stay far away from any "treatment" that seems cruel or isn't scientifically validated.
  3. Take autism-related challenges seriously. 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.
  4. Appreciate the Understand Autistic Strengths that accompany autism. Autism isn't 100% negative. An autistic person will also enjoy certain strengths that can improve their lives. It's important to appreciate and build upon these strengths. An autistic person will likely experience many or all of these:
    • Intense, passionate interests
    • Out-of-the-box thinking
    • A strong desire to help others
    • Systems thinking
    • Observational skills
    • A strong sense of morality
    • Kindness towards people who are different
  5. 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.
    • Acceptance is a process. It'll take effort and practice to adjust your expectations and remember not to stress too much over the little things.[14]
    • Autism acceptance is correlated with less stress in autistic people[15] and their parents.[16]

Reaching Out

Some people have an easier time with an autism diagnosis than others do. Especially if you're having a hard time understanding or coping with this news, it's good to reach out to other people.

  1. 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.
  2. 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 easy to understand if you're autistic. Autistic people find it easier to communicate with each other than with non-autistics.[17] It's nice to have like-minded friends.
    • 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.
  3. 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.[18]
    • 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).
  4. 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.

Handling a Family Member's Diagnosis

This section is written with parents, caregivers, and family members of newly-diagnosed autistic people in mind.

  1. 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.[19][20] 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 Understand Autistic Strengths.[21] 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.
  2. Find a few resources for parents and caregivers of newly-diagnosed autistic kids. Much has been written about adjusting to the news and making the first steps afterwards.
  3. Keep in mind 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.[24][25] Save your most vulnerable moments for when your loved one is not around, and make it clear to them that you love and appreciate them (autism and all).[26] Don't pass a negative view of autism onto your loved one.[27]
    • Autistic people with more accepting environments tend to have better mental health outcomes.[28]
    • A caregiver's job 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.
  4. Support your loved one. They may be 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, talking about their special interests together, enjoying quality time, or something else.
  5. 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 compliance-based therapies and fad "treatments," as these can harm your child.
    • 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.
  6. Choose support groups mindfully. Some support groups seek to help loved ones of autistic people and teach them about autism. Yet others are toxic communities full of complaining, negativity, and blame. Stay away from groups that might encourage a downward spiral, and find something with a positive focus. Here are a few things to consider:
    • Do autistic adults (such as autistic parents of autistic kids) attend? Do they seem happy and comfortable to be here?
    • Do group members routinely blame and shame themselves or their loved ones?
    • Are group members interested in helping their kids, or do they just want to play the victim?[29]
    • Do conspiracy theories about vaccines, modern medicine, or other things get passed around?
    • Is the focus on fighting autism, or do they make peace with autism while seeking to help?
    • Do they hate autism?[30]
    • Would you be okay with people talking about non-autistic children this way?
  7. Talk to autistic adults for advice and support. Along with being good friends, autistic adults can help you imagine what an autistic child's future could look like.[31] 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.
  8. 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 is unique.[32][33]
    • Autistic people who don't hide their autistic traits have better mental health.[34]
  9. Tell a Child They Are Autistic about autism. Explain how autism makes some things harder for them and tell them about the positive aspects of autism too. Look for books written by and about autistic people.
    • If your loved one feels positively about autism, this is a sign of healthy self-esteem.
    • Tell a child that they're autistic before they enter school. Autistic kids may figure out quickly that they're different. If you tell them about it first, you can set the tone and help them understand that there's nothing "wrong" with them.[35]
    • 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 kids, teens, and adults may benefit from reading articles on autism. You can direct them towards wikiHow articles such as or towards the autistic community online.
  10. Work together with your loved one to make their life easier. Talk with them about which things are hard for them and why. Brainstorm solutions together. Let them be an active participant in the process, not the object of a project. You can work together to make life better.
    • Brainstorm coping strategies together.
  11. Give yourself and your loved one a break. You do not need to put them through 40 hours of therapy per week.[36] You don't need to spend every minute hovering over them or micromanaging what they do.[37] No one will die if they meet a few milestones late. Autistic people need time to relax, do things they enjoy, and have fun without an adult giving them directions. Give yourself time to rest, relax, and stop obsessing over developmental timelines and "should"s and "shouldn't"s.[38] It isn't good for your child, and it certainly isn't good for you.
    • You don't need to hover. It's okay to sit quietly or do a chore in the next room while your loved one lines up objects nearby.
    • It's okay to let them watch a little parent-approved TV.[39]
    • Enjoy quality time that isn't focused on a lesson. Be willing to just explore, chat, hang out, and have fun.
    • Take a break if you're overwhelmed. Behave the way you'd want your loved one to do: Say you need a break, step out, breathe deeply, and do a relaxation exercise or two.
    • Don't try to meet unrealistic expectations. It's normal for autistic kids not to meet their milestones at the average times.[40] Some milestones might come early, and some might come late. Throw out the standardized calendar, and instead focus on what the 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.
  12. Learn about best practices for raising an autistic child. If your loved one is still a kid, then now is a good time to start learning about the best parenting techniques for autistic kids. In general, autistic children do best in a structured, empathetic, and gentle environment.[41] Tailor your parenting style to their unique needs.[42] You won't always be a perfect caregiver, but showing that you care goes a long way.
    • Reduce stress for your child as much as possible.[43]
    • Create a stable routine. Predictability can reduce anxiety.
    • Presume competence. Assume that they're capable and focus on letting their abilities shine.[44]
    • Listen carefully to them. Autistic brains work differently, so if you're non-autistic, you'll have to try harder to understand. Making the effort is important.
    • Focus on empathy, not control. If they're behaving imperfectly, try to figure out what's Figure Out Why an Autistic Person Is Upset or stopping them, instead of trying to make them behave.
    • Teach Good Behavior Without Harsh Discipline for positive discipline.
    • Be forgiving. When they make a mistake, talk to them about how to handle it (now or next time).
    • Encourage them to express wants and needs, from "I'm scared" to "I need a break" to "I want to do this more often with you."
  13. Put your loved one'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.



Warnings

  • Be careful when reading about anti-autism groups like Boycott 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.

Related Articles

References

  1. ↑ https://theautisticadvocate.com/2017/11/safe-places-online-for-parents-of-autistic-children-to-learn-about-autism.html
  2. ↑ [v161619_b01]. 9 October 2020.
  3. ↑ http://autisticadvocacy.org/about-asan/leadership/
  4. ↑ http://irisgracepainting.com/ Artist Iris Grace
  5. ↑ http://autismmythbusters.com/general-public/famous-autistic-people/
  6. ↑ https://autismandathletics.wordpress.com/
  7. ↑ https://www.newscientist.com/article/dn3676-einstein-and-newton-showed-signs-of-autism/
  8. ↑ https://misslunarose.home.blog/2019/06/22/i-like-life/
  9. ↑ https://www.vox.com/the-big-idea/2018/4/28/17295398/cdc-autism-rates-epidemic-diagnosis-vaccines-myth
  10. ↑ https://misslunarose.home.blog/2019/06/27/autism-false-prophecies-doom/
  11. ↑ https://autisticmama.com/no-one-knows-your-autistic-childs-future/
  12. ↑ https://medium.com/@needsnyc/severe-autism-50a634efe9c0
  13. ↑ https://awnnetwork.org/parent-expectations-and-autism-acceptance/
  14. ↑ http://www.thinkingautismguide.com/2012/09/from-autism-stress-to-autism-acceptance.html
  15. ↑ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807490/
  16. ↑ https://www.ncbi.nlm.nih.gov/pubmed/22297202
  17. ↑ https://misslunarose.home.blog/2019/07/29/theory-of-mind/
  18. ↑ Nothing About Us Without Us is For Us
  19. ↑ http://content.time.com/time/health/article/0,8599,1935959,00.html
  20. ↑ http://adiaryofamom.com/2013/11/12/no-more-a-letter-to-suzanne-wright/
  21. ↑ https://www.autismspectrum.org.au/content/strengths-and-talents-employers
  22. ↑ http://www.thinkingautismguide.com/2017/03/after-autism-diagnosis-13-necessary.html
  23. ↑ https://misslunarose.home.blog/need-help/
  24. ↑ http://autisticadvocacy.org/2012/06/you-are-not-a-burden/
  25. ↑ https://autisticnotweird.com/five-ways-to-damage/
  26. ↑ http://www.ellenstumbo.com/what-do-you-think-i-feel-about-your-disability/
  27. ↑ http://www.nytimes.com/2004/12/20/health/20autism.html?_r=0
  28. ↑ https://network.autism.org.uk/good-practice/evidence-base/autism-acceptance-and-mental-health
  29. ↑ http://respectfullyconnected.com/2016/12/playing-victim/
  30. ↑ https://autisticnotweird.com/hating-autism/
  31. ↑ http://www.ellenstumbo.com/how-inclusive-are-we/
  32. ↑ https://www.shauryafoundationtrust.org/2018/11/07/do-this-to-make-your-child-with-autism-grow-up-happy/
  33. ↑ https://adiaryofamom.com/2013/06/20/this-place/
  34. ↑ https://network.autism.org.uk/good-practice/evidence-base/autism-acceptance-and-mental-health
  35. ↑ https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/
  36. ↑ https://www.youtube.com/watch?v=qkd0I3lTvO8 (captions available)
  37. ↑ http://loveexplosions.net/2013/07/05/the-case-for-backing-the-frick-off/
  38. ↑ http://loveexplosions.net/2014/11/10/buoyancy-now-we-float/
  39. ↑ https://www.verywellhealth.com/top-reasons-to-allow-autistic-children-to-watch-tv-260316
  40. ↑ http://musingsofanaspie.com/2014/12/12/chronologically-out-of-step/
  41. ↑ https://misslunarose.home.blog/2019/06/11/7-things-autism-anxiety/
  42. ↑ https://theaspergian.com/2019/03/30/20-top-tips-for-raising-an-autistic-child/
  43. ↑ https://www.disabilityscoop.com/2015/06/03/autism-severity-stress/20354/
  44. ↑ http://emmashopebook.com/2013/03/07/presume-competence-what-does-that-mean-exactly/
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