Grace is a late-diagnosed blogger and advocate for autistic children and adults. Her blog, Autistic Empath offers a variety of insights on spectrum life, including myths and misconceptions, coping strategies, what it’s like to live in an NT world, Autistic adulthood, advocacy, and practical daily living tips. This week she shared some of her experiences growing up undiagnosed and her advocacy work that helps NT parents better understand their neurodiverse children.
Can you tell me a little more about yourself? What do you do for work/fun? What made you interested in starting your website?
I’m always confused by “tell me about yourself” questions haha. I never quite know what people want to know. I grew up in a household full of “weird” people, all probably ND (neurodiverse) in one way or another. I spent my formative years in dance and drama classes and I still want to be on stage as much as possible – it feels like home. I’m a geek with a dark sense of humor who loves Star Trek, Star Wars, Twilight Zone, Discworld, Welcome To Night Vale, etc. At the moment, I work in medical records, but I’ve spent time as a tech support rep, a librarian, a massage therapist, and even a stripper. I hope to make Autistic Empath my full time job. When I’m not working or writing for the blog, I love to knit, dance, and bake. I have a great love of British comedy, so I spend a lot of time watching and/or listening to Monty Python, Red Dwarf, Douglas Adams, and suchlike.
As soon as I had confirmation that I was autistic, I knew I wanted to write Autistic Empath – I even knew the title of the blog months before I started it. There was so much that I had learned the hard way about getting by as an adult without support, I felt sure there were other people who could have an easier time if I told my story. And I didn’t want any other little autistic girl who made good grades and didn’t cause trouble to fall through the cracks and spend her whole life thinking she was broken. That’s how I kind of stumbled into the “translating the autistic experience for neurotypical parents of autistic kids” niche, which seems to be where I’m doing the most good so far.
How did you become aware you were Autistic? Was it presented as something positive, negative, or neutral?
My first inkling that I might be autistic was when I was about 11. My mother had read Son-Rise by Barry Neil Kaufman, and for some reason, she gave it to me. Somehow it was very clear to me that I was like that little boy in the book, regardless of the fact that Raun Kaufman was profoundly affected and non-verbal while I was hyperlexic and “all but normal,” as it were. Nobody ever suggested I get tested (it wouldn’t have done any good, seeing as in the 1990s the prevailing wisdom still said that girls couldn’t be autistic unless they were profoundly affected or referred to anorexia as “the female Asperger’s”). I learned about Asperger’s syndrome some years later when it was considered “mild autism,” and asked my mom if she thought that might be me. She said it probably was and then never mentioned it again.
I learned some rudimentary social skills while working in bars in my 20s, but in my early 30s, working in an office job where everyone was sober, I realized I was hopeless socially. I didn’t know how to start or end a conversation, I had to yank my face into an acceptable expression of greeting or else people thought I was rude and unfriendly – I even lost out on promotions because I didn’t “smile enough or say good morning.” So I sought out a professional diagnosis at age 35. I was lucky that the doctor who accepted me for diagnosis had been my preschool teacher – she said the first time she learned about Asperger’s in grad school, she immediately thought of me. She remembered all the early signs that everyone had missed because nobody knew what they were back then.
My diagnosis brought about two very important realizations for me: 1 – I’m not broken, I’m just autistic. The same thing you hear all the time from adult-diagnosed autistics. 2 – There was a reason I had to work so hard to barely keep up with adult life, and that reason was severe ADHD. I wasn’t a failure at being human, I was running on Linux in a world filled with Microsoft – the compatibility issues were inevitable. (Lots of people use Mac vs. PC for that analogy, but I think Linux is more apt. Linux only works if you know the right commands and syntax – you have to speak the right language – I think that makes a very good analogy for autism.) All in all, getting my diagnosis was a great relief to me, and it gave me the first sense of purpose I’ve ever really had.
I appreciated your article about “picky” eating. What advice do you have for parents who are trying to expand their child’s food intake in safe ways?
Oh boy, do I wish I had a good answer for this! I get this question a lot, including from a friend of mine who is an SLP but has trouble getting her own daughter to expand her palate. To be honest, I grew up thinking most food was gross in one way or another. My parents couldn’t cook, almost every meal in our house was overcooked (or outright burnt) and devoid of seasoning. I didn’t learn what flavor was until I was a teenager. I always had problems with textures of foods, but I was always invalidated or told I was making excuses when I said anything about it.
So the best advice I have for parents is to first believe your kids. If an autistic child has a real aversion to a food, you’ll almost certainly be able to tell – it’ll probably be a visceral reaction. If they spit it out or gag or something like that, don’t force them to eat it.
That said, there’s nothing wrong with having a house rule that you have to try everything at least once, I think that’s a great idea! And encourage them (without pushing) to re-try things they’ve hated after a few years. As Shakespeare said, “A man loves the meat in his youth that he cannot endure in his age.” I used to hate all forms of cheese, spinach, steak, broccoli, any salad dressing except Italian, bell peppers, and lots of other things. Now, as an adult, I enjoy very sharp cheeses, fresh spinach (but not cooked), steaks cooked medium, broccoli in many forms (as long as it’s not blanched or boiled), almost any vinaigrette, and red bell peppers. But eggs and dark meat still make me sick, and you can’t pay me enough to eat meatloaf or mushrooms. You might get good results by telling them that their taste buds change every few years (that’s not quite true, but it may be interesting enough to get through to them). And, of course, if they still hate it, let it go. They don’t have to like every food.
Another couple of notes on this: Do keep an eye on their nutrition. If your kids are not getting the right balance of vitamins, protein, etc, there is no shame in using nutrition replacements and supplements. It’s better for everyone’s mental health to get their nutrition that way and avoid constant fights and meltdowns. Texture can be a big stumbling block, especially with fruits and vegetables, which might be mushy or crunchy or anywhere in between from one meal to the next. If your kid prefers crackers or pretzels to produce, that might be part of it.
And just so you know, there are plenty of autistic adults who eat a limited range of foods and manage to avoid malnutrition, so don’t lose hope!
You’ve written that much of your school trauma came from teachers. What do you wish they would have done differently that would have helped improve your overall academic experience?
My biggest problem with my teachers growing up was that they expected me to be able to do everything just because I scored high enough on the IQ test to be placed in the gifted program. I was hyperlexic and above grade level in many subjects, but there was a huge gap between my language skills and my math skills. Of course, it would have helped a great deal if they hadn’t ridiculed me as much as all the kids did, but that’s just basic decency (which was distinctly lacking among my elementary school teachers and some of my secondary teachers as well).
What really would have helped is if they had encouraged me to ask for help when I needed it, instead of mocking me for not being perfect. In elementary school, when I tried to ask for help, I was often told “I thought you were supposed to be smart” and then I was ignored. In middle and high school, the best I usually got was “you’re smart, you can figure it out” before the teacher left me to my own devices. If they did try to help me, I often got stuck on their wording or something and then I was accused of “holding the whole class back.” They could have said that they would meet with me after class to explain it in better detail, but they never did. I felt like I wasn’t allowed to ask for help, because I was supposed to just be able to get everything on my own.
Also, instead of just telling me to “get organized” or “learn to keep up with my assignments,” I would have been so grateful if someone had taught me HOW to do that! I’m a grown woman now who is completely timeblind and has to write down everything in three or four different places to remember that any appointment or deadline exists. I wish so much that someone would have taught me how to keep track of things when you only recognize two times: “now” and “not now.”
What about the non-human school environment (the physical surroundings, the schedule, flexibility, etc.)? What did you like or dislike as a student?
First and foremost, I think PE class should be abolished. Forcing kids to participate in team sports or physical competitions is cruel and many of us never recover from the experience. I’m a lifelong dancer, but I have a lot of dyspraxic traits that make me uncoordinated anytime music isn’t involved – I can’t throw or catch a ball, or run, or swim, or pretty much anything else that happens during PE class or Field Days. There has to be a better way to make sure kids are active during the school day.
Fluorescent lights were (and still are) terrible for me. When white boards took over from chalkboards, I had a lot of trouble with the lighting and glare distracting me and making it hard for me to get the information I was supposed to be learning.
Lunchtimes were problematic for me. I’m not quite sure if it was the noise, the crowd, the food, or what, but I stopped eating lunch in the sixth grade. My parents didn’t let me bring my lunch, but I’m not sure I would have eaten in the cafeteria anyway. I used lunch as a time to get away from people and just do my own thing, and the sooner I could get outside, the better.
In middle and high school, we were only given five minutes between classes, and I never felt that was enough. It was really hard to make sure I had all my necessary books and get from one end of the school to the other, let alone get a bathroom break in if needed. Some years, my locker ended up on completely the other side of campus from any of my classes, so I just took to carrying all my books all the time – not good for a developing spine. Having ten minutes between classes instead of five would have made a big difference.
What do you think are some foundational steps parents can take to help their child grow with a positive Autistic identity?
1 – Tell your child that they are autistic! If you don’t give them the right word for it, other kids and teachers will give them words like stupid, lazy, weird, bad, etc. Knowing that they are autistic will prevent them from growing up thinking that they’re broken or a failure and will help them understand how their brain works.
2 – Give them tools. Help them learn strategies for emotional regulation, encourage them to explain their thinking to you and to others so they learn how to communicate clearly, teach them how to use positive sensory input to regulate themselves. This will give them control over themselves and their bodies.
3 – Believe them. Accept their sensory sensitivities and show them how to work around them to get by in the world. Instead of telling them “it’s not that loud” or “you’ll be fine,” offer them headphones or ear defenders. If they have a problem with uncomfortable clothes, take them shopping with you and let them show you what materials and styles feel good or bad. This lets them know that the way they experience the world is real and correct, even if it’s different from other people, and it helps them learn how to take care of themselves in regards to their sensory issues.
Anything else you want to share that you are passionate about?
Oh I’m passionate about loads of things, that’s kind of the whole thing about being autistic haha!
I’ve been very surprised by the response to my article about how to avoid gaslighting autistic kids (https://autisticempath.com/how-not-to-gaslight-autistic-kids). Parents have told me that they thought their kids were making up their sensory issues or trying to get out of things, and they were amazed to hear an adult give credence to what they thought was their child’s “bad behavior.” Other parents have said that it all made sense once I explained it, but their children had never been able to communicate it to them clearly. So this has become a huge goal for me – to try to help parents understand their autistic kids. There’s lots of autistic adults out there sharing our experiences, but getting those stories in front of parents is the best way to make a real difference for the autistic kids growing up now.
Another thing I want people to understand is that autistic people are not perpetual children. We grow up. We have relationships, and families, and we have sex. Teaching consent and healthy boundaries and healthy sexuality is just as important for autistic kids and teens as for their neurotypical peers. More important, in fact, since we spend so much of our lives being told that we’re overreacting or taking things too seriously, which makes it hard for us to know when we’re being abused or taken advantage of and keeps us from learning how to create and maintain boundaries.