My name is Luna Rose. I am an autistic young woman, majoring in Computer Science, whose current special interests include writing, drawing, and autism.
I'm posting my story in the hopes that it will help autistic people and their loved ones get a better sense of what autism looks like: not the fearmongering, not the doom and gloom imagery, not the hate speech. An actual autistic person.
I am one example of what an autistic adult looks like. You will meet autistic people doing better than I am. You will meet autistic people who face more challenges than I do. But autism is not a sentence of unhappiness, and it will be fine. Don't give up hope.
It's going to be okay.
- 1 Undiagnosed Childhood
- 2 My Dad's Help
- 3 Diagnosis
- 4 Work
- 5 Advice
- 6 Learning More
I was (un)lucky enough to not be diagnosed as a small child.
That doesn't mean I didn't display symptoms. I wandered off in a mall around age 4 and unthinkingly gave my parents a huge fright. I spun in circles until I fell down giggling. I organized my toys and built Lego villages rather than playing with the characters. (I knew girls were supposed to play with dolls, but they were boring to me.) I cried and bit my arms at school assemblies. I eventually figured out to make friends when I was around 8 years old. My handwriting was so bad that people knew my homework was mine, whether I had remembered to write my name or not. And I had an unusual interest in cats.
My dad, being an offbeat individual, assumed that I was simply following his footsteps. My parents bought me more Legos and cat books on my birthdays, chalked my covered ears up to childhood sensitivities, and considered me an introvert.
My Dad's Help
I was raised mostly by my father, since my mom was at the office for most of my childhood. His respectful and compassionate parenting style is one of the reasons I am doing so well today.
My dad didn't know I was autistic until I was 18 years old, but he addressed many of my symptoms through general coaching and encouragement: basic parenting. I knew that no meant no (when I said it or when he did), so when he told me how upset he was when I wandered off at the mall, I knew never to do it again.
My dad treated me like an individual, not like a poor baby stolen away by autism. He talked me through social situations, and encouraged my special interests. (He has read nearly every major story and article that I have written.) In his eyes, I was different, not deficient.
Obviously, my dad was not the only reason I did well. I had plenty of internal motivation, and I worked hard when I needed to. I had great teachers and supportive siblings. My mom's tireless work paid for all my needs. And many of my disability symptoms are less debilitating than they are for other autistic people.
When I was 18, I mentioned to my doctor that I was having trouble with sensory overload. What should I do? I was expecting a few tips, but instead she mentioned Asperger Syndrome. Due to the volume of unpleasant stereotypes (um, I have plenty of empathy!), I immediately told her that that was ridiculous.
For whatever reason, I decided to research it anyway. I read things written by autistic people, who provided a much more accurate picture of how autism looked. (Thankfully I ran across ASAN before Autism Speaks!) Suddenly, all my quirks and childhood differences began to make sense.
At age 18 1/2, I was a self-diagnosed autistic woman, pestering my parents endlessly for an autism screening. I finally felt understood. Eventually they agreed to take me to a very cautious autism specialist, who first tentatively called it PDD-NOS, and then Asperger Syndrome (once she got to know me better). Since Asperger Syndrome no longer exists under the DSM 5, I just call it autism.
My special interests have led to a variety of volunteer work and writing.
I have written short stories, poems, and novels for recreation. I started my first novel shortly after I turned 11 and as of 2015 am rewriting novel #4. These have not been published (yet?).
I have won a few short story contests and had poems published in children's anthologies as a child and preteen.
I have written a line of writing tutorials at the website deviantART. Four of my written works (3 tutorials, one short story) were featured sitewide as Daily Deviations. I also posted drawings there for fun.
In 2014 I continued my pattern of writing for weirdly-capitalized websites, this time volunteering at wikiHow. There I worked on restructuring the Autism Spectrum category (which was previously split into autism and aspergers), writing more articles for autistic people, and changing the discourse to reflect the standards of the autistic community.
The wikiHow community has been incredibly supportive of my efforts, and opening to learning more from the broader autistic community. As of August 2015, I am thankful to say that 5 of the autism articles I started have been featured.
I'm autistic and I've studied autism since before I was diagnosed. Here is what I want you to know.
For Autistic People
Life is going to be difficult and scary for you at times. I'm sorry to say that this is a part of life, especially if you're autistic. This isn't fair or right; it's just the way it is right now. I hope someday it won't be.
You may struggle with anxiety, depression, and horrible self esteem issues. You may be told that your brain is an epidemic, a disaster, the end of life for your family. This isn't true. And yes, I mean it, even if you've been labeled "low-functioning." You are okay, you aren't a burden, and you deserve to live.
- Get a good therapist. A good therapist is someone who respects you and doesn't make you feel bad about yourself. They help you learn how to handle difficult situations, and they always listen to you. It's okay to try out different therapists until you find one who is a good match.
- Make autistic friends. Autistic friends can be really helpful! They can teach you skills and help you feel better if you feel bad about yourself. Look for them at school, at disability groups, or on the internet.
- Speak up if someone is hurting you. It's not okay for people to hold you down, hurt your body, lock you in rooms, or make you cry a lot. This is their fault, not yours. You're okay and they're wrong. Find someone you trust and tell them you need help. Keep talking until someone listens.
- Stop worrying about "normal." You aren't normal. You're autistic. Worry less about fitting in and acting "socially appropriate," and start focusing on what makes you happy. What do you want? What is best for you?
- Remember it's okay to have special needs. You can't do everything, and you shouldn't be expected to. It's all right to ask for help, and to get disability accommodations.
- Love your special interests. Special interests are a gift! They help you relax, feel confident, and gain important skills. Spend time on them, and consider a field of study or job that involves them.
- Get in touch with the Autistic community. Fellow autistic people can help you learn to cope, love yourself, and handle problems you face (from self esteem to replacing destructive stims).
- Don't blame yourself. People might tell you that autism ruins everything. These people are bullies, and they say mean things because they're hurting inside. This isn't your fault. Try hard to love yourself, and get to know the autistic community.
- Talk to someone if it gets bad. Hating yourself, wanting to hurt yourself, or wanting to die is not normal.
- Meet the autistic community. There are lots of people like you. Look at ASAN, the Autism Women's Network, and Autism Acceptance Month (some of my favorites). These people care about you and want you to be happy.
(I'm doing my best to use plain language so that intellectually disabled autistic people can understand me too. I'm sorry if it sounds odd. I'm not very used to this and my intent is to be sincere and helpful.)
For Parents and Caregivers
Your autistic child is going to be fine. Will they be like me? No, probably not. I'm an individual, and so is your child. But since I have lived through a good number of the challenges (and blessings) of autism, I can shed some light on them.
- Listen to your child. Not just words, either: the body language, the cries, and even the behaviors.
- Find a good therapist. Therapy should be fun/neutral, consensual, and helpful. If the therapy isn't helpful, if the child is afraid of it, or if your child seems to be regressing, it's time to find something else. (Some therapists force compliance, cause PTSD, and then blame the child/parent. I managed to avoid this, but have heard stories from others who haven't.)
- Focus on skills, not normalization or compliance. Stamping autism from your child's brain is not necessary for their happiness (and is usually counterproductive). Instead, help them gain skills and protect their safety. Let fitting in be their personal decision.
- Unacceptable behavior is unacceptable behavior. I quit wandering off and hiding away because (1) my dad firmly said no, and (2) he explained how much it scared him, and (3) I knew that "That scares me" means "that needs to stop" (whether I say it or he does). If the explanation doesn't stick, don't give up: they'll realize it eventually.
- Don't overuse external motivators. Heavy reliance upon external motivators can lead to a drifting, powerless child. Try positive natural consequences, gentle praise, and respectful parenting strategies.
- Take care of yourself. Part of being a good parent is having the energy to be a good parent. Take time to relax, take care of yourself, and allow yourself to adjust. Parenting isn't easy. Give yourself a break.
Some people are going to tell you that ethics aren't important in treating autism, because autistic people aren't real people until the autism is gone. I seriously question the wisdom of listening to those people.
- No means no. Except in cases of health and safety, your child should be able to say no. This is for a ton of reasons: fostering independence, reduction of anxiety, abuse prevention, and helping them listen to you. (If no means no when Abby says it, it then no must also mean no when Mommy says it.) If you have to override a no, try finding the cause and striking a deal to fix it, and/or explain why overriding this no is important. Make it clear that you still care about what they have to say.
- Trust your instincts. If something makes you uncomfortable, it's probably for a good reason. If someone tells you not to trust your instincts, they may not have your child's best interests in mind.
- Encourage their strengths. Autistic people are people and they have strengths. Some will be related to autism (such as special interests), and some will be uniquely theirs.
- Celebrate their growth. Your child will learn in grow in many new ways. Help them recognize their accomplishments and feel proud of a job well done.
- Teach them it's okay to be autistic. Autism will be part of their everyday life for the rest of their lives. Do you want them to be ashamed of it?
Don't just take my word for this stuff. There are tons of wise and experienced people who can help you.
- Listen to autistic adults. They knew what it was like to grow up as an autistic child, and what worked and what didn't. They can help you. Give them a chance.
- Watch your sources. Some organizations (coughAutismSpeakscough) play upon parents' early fears, stating that autistic children and their families will have horrible terrible lives unless their organization gets more money. This is exploitative of families and deeply hurtful to the children. Be careful about the sources you consult, and use your judgment.
- Consider the autism acceptance movement. This movement of autistic people and their loved ones encourages support and an end to stigma. This helps (1) make the world more inclusive to autistic people, and (2) reduce self esteem issues in autistic people. You and/or your autistic loved one may benefit from the environment of inclusiveness and hope.