I knew I was autistic before I got the test results back.
I was the one who asked to get tested. After a disastrous first college experience involving life-threatening levels of stress and an ambulance ride, I wanted answers and I wanted a guidebook to never going through anything like that again. And I got one. It was called autism.
It wasn’t my idea at first. It was suggested to me during a doctor visit, and I laughed it off. But then I looked it up, and suddenly my life was falling into place. I’ve heard it compared to Hagrid saying “yer a wizard, Harry,” and yeah, that’s basically the feeling. All of a sudden, everything in your life makes sense.
I researched autism, in a very autistic (i.e., intense) manner, for weeks on end. As a partially college-educated woman with decent deductive reasoning skills, I was able to correctly discern that I was on the autism spectrum. In fact, my autistic traits were stronger than I realized—I tested as having borderline “moderate” to “severe” developmental delays later on.
I’m also very glad that I saw a psychologist to confirm my diagnosis. She wrote a report on my diagnosis that I was able to show to my next, non-recipe-for-disaster school in order to help me get accommodations. She also accurately spotted my anxiety and depression, and she was able to teach me necessary skills (like actually talking about my feelings instead of suffering in silence. Who knew?).
I’m one of the lucky ones. It only took about a month for me to get diagnosed.
Self-diagnosis is a controversial topic. There’s a lot of name-calling and blaming, with a side of Oppression Olympics. I’m going to skip all of that, because it’s not my style, and focus on what to do if you feel like self-diagnosis may be your only option.
Why don’t people just get professionally diagnosed?
If only life were so easy.
Here are some examples of barriers that people may face with regards to autism diagnosis:
- Cost. Especially in the US, getting a diagnosis can be expensive.
- Location. Not everyone lives close to an autism specialist.
- Wait list. Long wait lists can be an issue. Even if they want to see a specialist, it may take months or longer. (Again: I was lucky.)
- Stereotypes. Doctors are human and they can make mistakes. Autistic girls, people of color, and adults may find it hard to be believed because autism is stereotyped as a little white boy condition.
- Discrimination. Once the word “autism” is in your medical files, you may be denied access to certain resources. It may be harder to immigrate somewhere or get an organ transplant.
- Unwilling parents. I hear from so many teens whose parents won’t believe them or take them to a specialist for help.
- Something else. Anxieties, fear of giving ammunition to controlling parents, poverty, and other issues could make people reluctant to get diagnosed.
While autism is what I know best, I’m betting that many of these barriers also exist for people with other conditions, such as depression or personality disorders.
Issues with self diagnosis
Unfortunately, self-diagnosis isn’t a perfect solution to the above problems. Here are some issues that you may experience.
You may misdiagnose yourself. What if you think that you’re autistic when you actually have ADHD? Then you might miss out on potentially life-changing medication.
You may miss another condition that you also have. For example, perhaps you chalk your fidgeting and weight loss up to being hypomanic, but you also have Graves disease (which, despite the scary-sounding name, is quite treatable).
You might scare yourself. For example, you might think that you have a life-threatening heart defect, when really you’re just experiencing panic attacks that definitely won’t kill you.
Even fewer people will believe you. There are always naysayers and people who want to believe you’re faking. You’ll find even more of these people if you tell them that you don’t have a professional diagnosis. And most of them don’t care about your welfare; they’re just looking for an excuse to be a jerk.
When you have nowhere else to go, turning to the internet can seem like your best bet. But relying on self-diagnosis alone can mean that you run the risk of not getting the help that you need.
How can you avoid these pitfalls?
Seeing a doctor is one way to significantly reduce the risk of these issues. However, I know that this isn’t possible for everyone, due to issues like the ones I listed above.
So, if medical resources are inaccessible to you, here is how to make the most of it.
Do a breadth-first search, not a depth-first search. Don’t get attached to any single diagnosis early on, because you don’t want to overlook something that matches your symptoms better (or that covers other symptoms not entirely covered by the first one). Look at lots of conditions that involve the symptoms you’re experiencing.
Use sources wisely.
- Stick to reputable websites (like CDC.gov or Mayo Clinic) when you can.
- Avoid biased sources (like Autism Speaks) or sources that try to sell you on a product or lifestyle.
- Avoid anyone who rejects basic scientific fact (such as vaccines being safer than measles).
- Remember that forums can include misinformed people, worst-case scenarios, and people who are self-sabotaging. Take them with a grain of salt.
- Try getting the inside scoop from well-informed people with the conditions you’re researching.
- Read from lots of sources, not just 2 or 3.
Take your time. While I don’t fully remember, I believe I was researching autism at an autistic level of intensity for about a month before I received a diagnosis. Don’t reach a conclusion in a single day, or even necessarily a week.
Research tips on recovery or management of the condition. Do they sound helpful, based on your personal experience, or do they sound like they’d help someone who has a different issue than you do? If you try some of them at home (e.g. DBT self-calming techniques or anxiety-reducing breathing exercises), do they help?
Even if you do all those things, there’s no guarantee that you won’t accidentally misdiagnose yourself. Try to go through the process slowly and thoughtfully. Take notes if it helps. Keep thinking it through and doing your best.
And if you can, make arrangements to see a doctor.
Convincing parents/guardians to let you see an expert
This is one of the most common problems I hear about: “I’m a teenager who is showing signs of a mental disability, but my parents say there’s nothing going on with me and they refuse to take me seriously!”
I want to start off by saying that I make no promises. Some parents are so genuinely terrible that they will refuse to listen to their children or to give them medical care when they need it. If you’re in that situation, there may be nothing you can say to make them let you get help, so self-diagnosis may be your only recourse for the time being.
I also understand that in many cases, teens are just plain scared to talk to their parents. There’s a lot of mental health stigma. Parents are biased because they want to believe that nothing is “wrong” with their child. Some parents tend to be dismissive, aloof, or authoritarian. It’s easy to think of all the ways that things could go wrong.
It might be hard, but I’d like you to, just for a moment, imagine what the worst realistic outcome would be.
- Would your parents or guardians ever hit you, or otherwise physically hurt you?
- Would they scream at you? (Have they done that before?)
- Would they kick you out of the house, or do something else abusive?
If you suspect that bringing up a medical issue could result in abuse, then it may be safer to stay quiet. Maybe the school nurse or school guidance counselor could advise you about caring for yourself without incurring caregiver wrath.
But does the worst realistic outcome not involve abuse? If not, ask yourself which is worse:
- Having an uncomfortable conversation with your parents, that may result in a doctor appointment and subsequent treatment
- Continuing to suffer in silence, and possibly have your condition worsen, for weeks or months or years
(Illnesses like anxiety and depression tend to get worse, not better, the longer you go without treatment. And you may end up needing more intense and expensive treatments than you would have if you had gotten help sooner.)
I know, I know. Would you rather. Pick your poison. Neither option sounds fun. You’re allowed to say “both of these stink.” Life does stink sometimes. You do have to make hard choices. You don’t have to like it. You’re allowed to say “this is scary and I wish I didn’t have to be in this situation.” I also wish you didn’t have to be in this situation. From the bottom of my heart, I wish I could just wave a magic wand and fix everything. I’d love to erase your problems. Sadly, I have zero wands, so you have to do this the hard way.
But I’ll do my best to help you by writing this now.
I’m guessing that a lot of you decided “talking to a parent/guardian sounds really difficult, but I want to start fixing my problems now, so I choose to be brave and give it a try.”
I’m proud of you, and also I’d like to help! So without further ado, here are some ways you can prepare:
- Write a list of your symptoms (if you haven’t already).
- Circle or make note of a few symptoms that you think your parents/guardians have probably noticed.
- Also circle or make note of the ones that are most negatively impacting your life.
- Write down or think of some parent-friendly goals (like school success, friendships, independence skills) that your symptoms are making it harder to do.
- Think about whether another trustworthy adult (like a teacher or school counselor) has recommended that you see an expert.
- Try writing down what you want to say. You can even write it as a letter if you want.
Also think about it from the perspective of your parent or guardian. If you were caring for a child or teen and they said they wanted to see a doctor for a mental condition, what would you think? You’d want to know that…
- This is important to the kid.
- This is seriously impacting the kid’s life, so it’s worth seeing a doctor.
- The kid believes that seeing a doctor can make a difference
Now that you’ve thought it through from an adult perspective, it’s time to present the issue to your family.
Here’s a basic template you could use to start:
“Hi Mom/Dad/Grandma/whoever, there’s something I’ve been meaning to talk about. You may have noticed that I’ve been experiencing [noticeable symptom(s)]. I’ve also been dealing with [difficult symptom(s) they might not know about]. It’s a struggle, and I want to work on it so that I can [goal(s)] more easily. (Possibly mention potential diagnosis, something said by another adult, and/or a helpful website.) Would you be willing to take me to a doctor so I can talk to them about it?”
Also feel free to freestyle it, adding things like “This is important to me” or “I’ve been struggling with this for a while” or “I’d feel a lot better if I could just talk to a doctor about it.”
Let’s do some examples!
Here’s a young man telling his mom that he thinks he might have inattentive type ADHD.
“Mom, is now a good time to talk? I have something important on my mind.
Okay… This is kind of hard to say, but I’ll do my best. I know you’ve been worried about me struggling in school. I try so hard, but I just can’t seem to focus and keep track of things. My mind drifts. I want to succeed and be a good student and son, but it’s like I’m hitting a barrier.
My guidance counselor said that it’s possible I may be dealing with inattentive type ADHD. If I do have it and I get diagnosed, I could get extra help at school, and I could try medication that could help me focus better. I’d like to see a doctor and get evaluated. Would you please schedule an appointment with the family doctor?
Thank you for listening. This is important to me, and I feel like getting help could make my life a lot easier in school and at home.”
This example is honest and heartfelt. The young man makes “I” statements about his feelings, and he directly connects the symptoms and the difficulties. He’s respectful and clear. If I were his mom, I’d totally be picking up the phone and calling that doctor office.
Here’s an autism one.
“Dad, I’ve been meaning to talk to you about something I’m going through. You might have noticed that I’ve struggled with making friends, and that loud noises really hurt me. I know you’ve been worried about how lonely I get at school, and how other girls tend to ignore me or bully me.
I want things to get better. I did a little research and I learned that my difficulties could be related to a condition called Asperger syndrome. It sounds a lot like what I experience. It’s also linked to creativity and good spatial skills, so it’s not all bad. If you’d like, I can show you a wikiHow article that describes it, and we could talk it through together.
I’d like to see a doctor to talk about the possibility. If I do have it, maybe I could get some help, and things would be a little easier. Could we talk about this and make an appointment?”
(Sadly, many people have negative knee-jerk reactions to the word “autism,” so words like “high-functioning,” “mild,” and “Aspergers” might be better received even if the distinctions are silly and useless.)
Perhaps another? Let’s do social anxiety.
“Abuelito, I’d like to talk to you about a problem I’ve been struggling with.
I know you feel worried about me because I spend so much time on my own and I get nervous around other people. I do my best to be brave, but it’s so hard. I’m scared all the time that they’re judging me and they’ll laugh at me. I try to follow people’s advice, and yet it’s not getting better.
I want to be able to make friends and have fun like the other teenagers do. But everything I’ve tried isn’t working. So I want to see a doctor. Our family doctor has probably seen teens like me before, and might know how to help me. This is important to me, and I’d really like to see her. Would you come with me?”
How you bring up the issue will depend on how you feel, and what you think will be the best way to break the news. It won’t be easy, at least not at first. It can take a lot of courage. And it could also be the start of a big, positive change for you.
If you’d like, feel free to check out the wikiHow article on telling your parents you might be autistic. (You can adapt the advice to any condition.)
Responding to concerns
So you deliver your script, out loud or via letter. But now your parent or guardian has something to say. What now? You didn’t plan for them to respond!
Except actually you did, because I can help with that too. I can’t anticipate all of the possible reactions, but I can write out a few things that may help you prepare.
“I don’t know if you have X. You’re so smart/talented/capable/friendly/other positive adjective.”
“Thank you for noticing. I don’t know if I have X either. I’ve only noticed that I have some signs of it, and it’s possible that I don’t have X and I have something else going on instead. That’s why I’d like to see a doctor, to make sure.
I am really struggling, and sometimes it’s in ways that aren’t really visible to everyone else, including you. Seeing a doctor is important to me. I appreciate you believing in my abilities. I hope you’ll believe in my judgment, too, when I say that I think I need help and that I’d like to talk to an expert for advice.”
“Why do you think you have X?”
“I’m not certain yet. That’s one reason why I’d like to see the doctor, so I can be sure about what’s going on.
I noticed I experience [symptoms], and that these can be signs of X.
I did think carefully about this, and do my research. If you’d like, I could show you an article or two and we could talk about it together.”
“Did I cause this problem? Is it my fault?”
“No, I don’t think so.
I don’t know why this happened. / I think I was born this way. DNA is no one’s fault. / I think it grew out of the bullying I experienced out of school. / Other answer”
(Even if you do believe that bad parenting played a role in you developing a mental disorder… it’s probably best to save that conversation for another day. One big news item per day is enough. And you’d likely want a therapist’s advice for how to bring up such a thorny topic.)
“Maybe we should wait and see.”
“I understand your hesitation. Honestly… I’ve been struggling with this for a while before I came to you. I really would like to move forward on getting help so that things can start getting better sooner.
I know that this is big news, and that it’s going to take time for you to process.”
“I’m just so confused and overwhelmed about this.”
“It’s okay. I’ve been feeling confused too. I’ve just been thinking about it for longer, so I’ve had longer to adjust. I know it’ll take time to process.
If you’d like, I’d be happy to share some of my research with you, and we could talk it over together.
You don’t have to feel certain about any of this right away. All I’d like is a doctor appointment so we can explore it further. Having your support would mean a lot to me. I’d like for us to figure this thing out together.”
I’d like to add that it’s totally okay to hug or hold hands with your parent or guardian if you feel like it.
“[Aggressive or rude statement]!”
“I’m sorry to hear you feel that way.
I’ll give you time to process and we can talk about it later.”
I can’t guarantee that this will make your parent/guardian let you see the doctor. But I’d like to think this strategy will give you a chance.
If they say no, your options are:
- Ask again later (in case persistence helps)
- Bring it up at your next doctor checkup, if you have one
- Talk to a school counselor or nurse for advice
With any luck, you’ll get an appointment scheduled, and you can begin to prepare.
Making the most of a doctor or specialist visit
Preparing for the visit can help you ensure that you bring up all your important points, and reduce the risk of the doctor or specialist misdiagnosing you.
Before the visit
Write a symptom list. Think of all the symptoms you’re exhibiting, both major and minor. Come back to the list and add things to it as you think of them. Not all of them may turn out to be relevant, but that’s okay. Any of them could be valuable clues as to what’s going on.
Prepare anecdotes behind your symptoms, if need be. For example, if you think you have bipolar disorder, you could say “Two weeks ago I felt so energetic and giddy, I went on a shopping spree and spent $500 on presents for my family. That’s way over my budget.” Or if you suspect you’re autistic, you could say “My parents found it amusing that I learned to read before I learned to speak.”
Write down your answers to self tests. The results aren’t the only thing that’s important. Print off the test questions, and circle your answers in pencil. (If you don’t have a printer, try making a digital copy to bring on a phone or tablet.) When you are able to see a doctor or specialist, you can show your answers to the questions to help them understand what’s going on with you.
Write down why you ruled something out. For example, write “I don’t believe I have social anxiety because I don’t worry much about what other people think. I worry that they’ll hurt me, not that they’ll disapprove.” (And if you’re wrong, this allows the doctor to pinpoint your misconception and explain it to you.)
If you’d like, you can check out the wikiHow article on preparing for an autism assessment. Even if you’re non-autistic, you can adapt the steps for any condition.
During the visit
Explain your symptoms. Show the doctor or specialist anything you’ve written, to help give them more information. If you brought notes, check them to make sure you aren’t forgetting anything important.
Use tentative language. If you act like you know exactly what’s going on with you, they might feel annoyed that you’re trying to do their job for them. Try saying things like “I suspect I may have bipolar disorder because…” or “When I researched panic disorder, it sounded familiar” instead of “I know I have this.” This will let the doctor know that you’re open to hearing their expert opinion.
Ask questions if you don’t understand why the doctor says something. The doctor or specialist may think that you have a condition that you don’t understand, or that you don’t think you don’t have. If you don’t get it, that’s okay! Just ask “Why do you think that?” It’s okay to ask them to slow down or explain.
Speak up if you suspect a misdiagnosis. Doctors and specialists are human. Their diagnoses are often based on what you tell them (especially with regards to mental disorders and conditions). So if you think the information they have is incomplete, say so. For example, “I’m also experiencing _____. How does that fit in to the picture?” or “I felt like schizophrenia is unlikely because I don’t think I experience any of the negative symptoms. Could we discuss it a little more?”
Thank the doctor for their help. Most experts go into their job because they want to help. They love hearing that they succeeded in helping you and that you appreciate what they did for you.
If you have an awful experience, try getting a second opinion. Most doctors and specialists are kind, caring people who are willing to listen to their patients and talk things over. But if your doctor brushes you off or speaks aggressively towards you, you may feel unsure whether you got the best care possible. It’s okay to see a different expert.
Self-diagnosis is a thorny issue, full of potential missteps and judgments from strangers. It’s something I usually see being done by vulnerable young people who have little access to resources.
I know life is hard when you worry that no one will understand you or believe you. It can be lonely, to struggle alone. You can feel like you’re the only person in the world.
I can’t fix everything. But I can say that I believe you when you say you need help. I can also encourage you to reach out to a person who might believe you, and who might take you to a doctor or specialist who can start helping you.
While I can’t guarantee good results, I can tell you this: the fact that this issue is prevalent enough for an article means that you’re not alone.
Do you have any advice, stories, or love for people looking at their diagnosis options? Please feel free to share.