I’m the parent of an autistic kid

Now what?

First of all, this isn’t just for parents, it is also for partners and friends and anyone else who wants to learn more! I’m only calling it parenting because I’m directly tying these things to action, but they can really work for anyone.

Note - I’m not a parent, I am a young adult. So I acknowledge that, on some level, I am not quite qualified to give parenting advice.

That being said, I am an autistic adult who knows the autistic experience. I also worked in an early childhood center for four years, as an overnight camp counselor, a service dog trainer, a theatre educator, and a handful of other education jobs (so like 6 or 7 years of experience-ish), as well as having a degree in psychology/theatre arts with a thesis in accessible education. I am combining all of the things that have worked for me in working with other autistic people as well as with myself and things I have read in various posts and books and such.

Anyway, I hope this can be a beneficial resource for you! I know how overwhelming things can be so I’ve tried to make this as clear as I can.

Also there are so. many. words. but I wanted to cover everything I could think of so you feel the most prepared.

I made this resource in 2021. At this point, some of these things are semi-outdated. The general sentiments still stand, hence why the page is still up, but for more updated resources and information, please check out my more recent channel content.

And this…

I made this after writing this page so there’s a lot of overlap but I definitely added some stuff that might be helpful for you!

1. Autism $peaks

This organization seems to be the leading representation for autism, but it is widely accepted as a hate group and I ask that you do not support them (learn more in this video!)

I also cover “autism parents” here - generally, you are not an “autism parent”, you are the parent of an autistic kid. Your child’s diagnosis does not define you!

2. ABA Therapy

This one is a bit tricky and controversial. So let me start by acknowledging the positives - it may seem to make a kid “higher functioning”, but at the cost of their coping skills and personality. I know you want what is best for your children and ABA is one of those “gray areas” that may seem good from an NT point of view but is horrible from an autie point of view. Please address your biases and be willing to learn. I outline the history and my experience in this video and linked some interesting studies in both the description and the comments.

Also, just so you know, regular talk therapy can be really tricky for neurodivergent people as well

Sensory Things

The most important thing to note is that having sensory issues is not a choice. It’s not being picky. It’s “this thing causes me physical pain”. Not only that, but we’re extra sensitive to all of those things. (Yes, phone chargers sometimes scream. You may not hear it, but it’s 100% real!) So telling us to “get over it” or “get used to it” is more or less the equivalent of telling us to ignore the pain of a broken toe. It’s super distressing. Not to mention that we tend to be people pleasers so if you say that, we will force ourselves to do it to make you happy which then sends us into a meltdown/makes us super cranky and irritable. Oh, and this extends to eye contact too. If they don’t like making eye contact, it’s painful for them and they can’t listen while doing it. That’s all there is to it.

Example of finding middle ground - if your kid doesn’t like to be touched but you want to hug them, compromise with a mutual hand touch (i.e. the one in Curious Incident)

Also if your kid experiences menstruation, here’s a resource on why that can be difficult and managing it!

Food & ARFID

Watch my video about this here

In general, autistic people often struggle with food and it is very common for us to have ARFID (Avoidant/Restrictive Food Intake Disorder), a disorder that more or less means we eat the same five things and have a hard time trying new ones. Also known as excessive picky eating. And it can be tricky because you want them to try new foods and branch out - not to mention that eating the same five things on repeat is not a lifestyle you want to have and making two dinners every night is just not an option. So… here’s the autie side of it and how you can compromise. (Or… how I think you can compromise? My mom and I still haven’t fully figured this one out)

First of all, a lot of our habits can look like eating disorder habits - eating at specific times, eating food in the same/a specific order, refusing to let food touch, rigid thinking patterns around food, etc. This is… generally just how we roll. Do not be concerned. We are more likely to develop eating disorders, simply because it’s something we can control, but these basic things are very typical.

I highly recommend the plates that have sections because then the foods can’t touch. Also I am very rigid about the times I eat because I can’t always tell if I’m hungry or remember if I’ve eaten or not. So I know that breakfast is when I wake up, lunch is 11:00, snack is 2:30, dinner is 5:00, and evening snack is 7:45. I also have a rule that I don’t eat/drink within an hour of bedtime so I don’t wake up having to go to the bathroom. And we had a rule in my house growing up that you could only eat a fruit or a veggie after dinner which was a good system for me.

In regards to trying new foods, a lot of the issue is texture and difference. If you want us to try something new, pair it with a safe food (we call these Same Foods). For example, if they’re used to pork, applesauce, and rice, try steak, applesauce, and rice next time! And plan maybe one new thing a week, don’t do it all at once. It takes a lot of our energy to try something new. Explaining in depth what is going to happen (or what it will taste like) also helps with the transition. And don’t be offended if we don’t like it. Also try not to tease us for eating the same few things - it’ll make us embarrassed to eat/try a bunch of new things that overload us just to make you happy. Be patient!

Some foods that work for me when I need protein but am having a particularly tough time with textures are box mac and cheese or pasta, smoothies, and apples & peanut butter. Anyway, there are many ARFID/picky-eating mommy blogs out there with various ideas and advice that might be more specific! This is just my experience and what I would do.

Stims & Tics

Watch my video about this here

Stims (self-stimulatory behavior such as tapping, flapping, leg-bouncing, etc) are ways that we regulate our emotions. Sometimes these stims can be self-injurious, and typically those are the ones we do when we are the most distressed - it’s a way of taking our internal brain explosion and externalizing it. Over time, you will begin to tell the difference between happy stims, anxious stims, and angry stims. They are an important part of our regulation and coping with the world. Little vocalizations like squeals and singing and hums and repeating noises or words (echolalia) are also stims. In the resources section I have included some links to my favorite stim toys and sensory friendly things to fidget with.

Many parents have asked me what to do if their child’s stims are self-harming or if they cause distress to the parent (you have an auditory sensitivity issue and they like to scream, for example). In both of those situations, the kid wants to get their energy out, so you shouldn’t tell them to stop. Instead, explain why the stim they are doing is harmful/upsetting and help them redirect to doing a different one. Make sure to only do this in extreme situations (if a stim is just generally annoying, that does not count) because, again, we want to make people happy and if you tell us to stop stimming a bunch of times, we will stop and then feel super stifled.

Tics are a little different from stims. With stims, we can stop doing them with enough concentration and effort, though that isn’t so great for our mental health. Tics we have no control over. If we try to stop it feels kind of like trying to hold in a sneeze. When people think of tics they think of Tourette’s (a syndrome categorized by complex tics) - and this is a very common comorbidity for autistic people, but a lot of us have simple non-Tourette’s tics too. Mine tend to only show up when I’m really exhausted or stressed and include hard blinks, jaw twitches, head twitches, unexplained sharp intakes of breath (I call them reverse hiccups), and random startles. Also some can hurt, though I don’t have any of those. Anyway, they’re perfectly normal.

Special Interests

Watch my video about this here

Special interests aren’t hobbies - they are a thing that has taken our interest and we must now spend every single moment cramming information about that thing into our brains. It’s common for people to think we can get up and take a break or work on something else and come back to the interest, like you can do for a hobby, but for us it is all consuming. We forget to eat and drink and go to bed and do things we are supposed to because of the depth of our interest. They are a bit of a blessing and a curse because they are so fun and safe and interesting but also… I forget to take care of myself. I also find that people are accepting of my socially acceptable special interests (language learning/linguistics, psychology, music) and unaccepting of my “weird” ones (sharks, Disney, the Russian Revolution). Also the expensive ones like American Girl (when I was little) and historical fashion. And special interests can be anything from a specific video game to social justice to a person. Please understand that these things may be a phase, but they are very very real and important to us. It is literally the only thing we can think about and if you ask us a question about one of our special interests and let us infodump we will love you forever.

School & Home

School can be a bit tricky for us because not only is there a social aspect and a focus aspect, but the general school system is not built for us and our learning styles. From what I’ve heard, Waldorf and Montessori teaching methods are more autie friendly, but I can’t speak to that first-hand. Anyway, reminder that your kid can still be successful even if they don’t do well in school. The system is heavily against us. (Here’s a video about that)

Also here’s how I make my dorm room accessible to me which might be helpful for your home on some level!

🥄 Spoon Theory

Watch my video about it here

Watch my song about it here

Spoon theory is a metaphor that is used to describe the amount of mental or physical energy a person has available for daily activities and tasks and it is widely used by the disabled and neurodivergent communities. Generally, a spoon is one “bar” of energy. Some days you wake up with a bunch of spoons and you feel quite bouncy and energetic. This might be a day where you get a bunch of things done, step out of your comfort zone, and have a dance party in your living room. Other days you wake up with half of a spoon and just talking tires you out or sends you into overload. It’s a lot harder to mask as well as do chores and go to school and simply handle anything when you are low on spoons. Our communities like to use this as a way to check in with one another - for example, I ask a friend if they have the spoons to listen to me rant about something. Also we spoonies tend to be quite wholesome and when we know a friend is having a rough day we’ll say we’re sending them spoons. Not only is it a great way to explain what you are feeling in a way that is (almost) universal, it’s a really cute metaphor too!

Prevention

Regression (aka Burnout)

Watch my video about it here

"Autistic regression” is actually called “autistic burnout” by the community. It happens when an autistic person is frequently placed in stressful situations without adequate time to recover and can look like loss of speech, reduced capacity to mask, emotional dysregulation, increased overload, hyperfixating strongly on special interests in an attempt to regulate, poor working memory, extreme executive dysfunction, increased interoception issues, increased meltdowns/overload, increased stimming, and overall seeming “more autistic”. A lot of parents see this as regression and, as a result, send their kid to more therapy to try and gain back the skills “lost”. But we’re actually showing you that we’re exhausted and what we really need is a break. And that may be a few days, a few weeks, or a few months, depending on the severity of the burnout. Most autistic adults have periods of their life that they can name as burnout. For example, I had one in fourth grade, one in tenth grade, and one last winter/spring. During those times we are more sensitive than usual and will likely need to stick to our special interests and routines and same foods. And we may need more help with things than we normally do. Do not be concerned that we are “losing skills”, we will likely gain them back, we just don’t have the energy right now. So be forgiving and let us do our own thing until we’re ready to be our full selves again.

Elopement

Elopement is when an autistic person wanders off or leaves a location without telling others. People assume that this only happens to nonspeaking & higher-support-needs autistics, but it can happen to anyone. And we do not usually think of it as eloping or as something major to worry about. Anyway, there are typically two major causes of elopement:

1. Explore! We might see a butterfly or a cool car or something we like in a store and go to follow/look at it. And we are so focused on the thing we are exploring that we may forget to tell the people we’re with where we are going. Or, after the fact, may not know how to get back. For example, I was recently in a craft store with a friend and they were picking out fabrics. I saw an aisle that looked like it had an entire rainbow of ribbon choices and I went to look at it. I was very happy and relaxed looking at all the ribbon until I realized I had no idea where my friend was so I had to wander the fabric aisles until I found her again.

2. Escape! We are stressed and anxious. It’s kind of like a meltdown but one to avoid a stressor - we solve the problem by removing ourselves from the situation. These are scary for us too because, just like in a meltdown, our situational awareness is pretty limited so we will likely have no idea how we ended up somewhere or how to get back. And it’s an innate “I need to get out of here right now or I will explode” feeling that is really hard to fight. The best way to prevent these is to avoid major stressors meltdown triggers. (ex. going to therapy, going to a school that isn’t a good fit, sensory overload, being around someone who makes us feel anxious)

When someone elopes, they are most likely to go to two categories of places:

1. Familiar places of comfort like a school, the library, or a friend’s house

2. Something visually stimmy, most often train tracks or bodies of water

Note that this is not something to be terrified of! Now you know the word for it and you can make a plan - have Find Friends on their phone, avoid stressors, communicate, etc.

Also this is a great toolkit

Speaking & AAC

Watch the video version here

Also if you want to implement ASL as an AAC method you can learn about it here

Not all autistic people are able to speak all the time. Some people don’t speak at all, some speak all the time without issue, and others lose speech in various situations such as overload or when meeting new people. Sometimes we can physically speak when we lose speech but are too overwhelmed to get the words out or may speak unreliably (i.e. say things we don’t mean). Other times the physical ability to make words just quits. For me, if I lose speech but then try to speak anyway, I am 100% going to melt down. I also have a significant stutter and I speak a lot more slowly and incoherently. This also happens when I get migraines.

Autistic people often have aphasias - not the traditional Broca’s and Wernicke’s aphasias you learned about in your high school psychology class, but some lesser known ones that affect how we speak and use words. In fact, these kinds of aphasias actually created many literary styles we use today! They are not an indication of intelligence, they’re just a difference in how we read and write. A common one is anomic aphasia, which is characterized by word retrieval failures, specifically with nouns and verbs. You know that thing when you’re speaking another language and you don’t know a word so you talk around it until the other person knows what you’re talking about? Yeah, we do that in our native language. And while it may be a little frustrating, it’s also kind of hilarious. Some personal favorites of mine include “cup hat” (lid), “bean greens” (…I tried, okay?), and “honk honk dog” (goose).

So! What do you do when your child loses speech/if your child doesn’t speak at all? Well, there are other kinds of communication! (Also spoken communication is not superior to other forms.) In this case, we use AAC, or Augmentative and Alternative Communication. This includes devices/apps, electronic keyboards, symbol based systems, pen and paper writing, ASL, and, frankly, anything else that works. A lot of people think that giving someone AAC will hinder their speech development, but research shows that it can actually improve vocabulary and speech. Not to mention that communication is a human right - everyone deserves to be able to share wants and needs and to connect with other people. I might add that AAC devices can be very expensive and are often not covered by insurance. But there are apps and many other options that you can use! My personal favorite is ASL - a lot of my autistic friends sign and that’s my preferred method of communication with them. Also Deaf culture and autistic culture are quite similar so it’s a transferrable skill. Even for someone who doesn’t loses speech often, AAC methods can still be helpful tools. If your child (or friend or partner) often loses speech, it’s important to discuss a plan with them beforehand on what communication method they prefer, if they like to be spoken to or not, if they like others speaking for them, etc. Everyone has different preferences.

Communication

Autistic people communicate differently. I’m fairly sure you know this by now. But here are a few cultural differences we have so you understand where we’re coming from.

Watch my video about this here

• We are direct. Some people see this as “blunt” and “rude” while others see it as “honest” and “refreshing”. Generally, it depends on how the thing being said in an honest manner affects them. For us (as you will soon read), listening and understanding takes a lot more energy and effort. Taking the time and energy to hide your meaning and then making the other person decode it is illogical. For example, if you say “Hey Sydney! There are some dishes in the sink!”, I will think “ah, there are dishes in the sink… very cool?” I need you to instead say “Hey Sydney! There are some dirty dishes in the sink. Could you please clean them up before Dad gets home?” Here, you have told me what needs doing and when to do it. The first time, while you were being “polite”, I missed the entire meaning of your statement.

• We tend to interrupt. People see this as rude as well, but there is actually a logic to it - once we get the general gist of where the other person is going, we will hop in to add on and show that we are interested and paying attention. It lets the conversation build. And in general we discuss several things at once. It’s like conversation has multiple tabs open and we keep flipping between them but we’re easily able to follow each one. We don’t see it as rude at all!

• We talk about ourselves a lot. I know, how dare we be so self-centered, right? Well, actually, no. Because this is how we connect. For example, if my friend is talking about how one of their professors said something really offensive and now they feel terrible, I will respond with my own story about something similar happening to me. Seems self-centered, right? But no, I’m showing that friend that I understand where they’re coming from, I appreciate that they’re comfortable being vulnerable with me, and that I feel comfortable being vulnerable with them. And, by telling my story, I can share how I dealt with the situation which then lends itself to problem solving. Our conversations also tend to look like “I’m going to talk about my special interest for 10 minutes and then you will talk about yours” which, to an outsider, seems like we’re sitting together and talking about ourselves. But this is how we connect. So when we’re talking to you on end about ourselves or our special interest, we’re trying to show you that we care.

Auditory Processing

Watch the video version here

Most autistic people struggle with auditory processing disorder. To clarify, we usually hear everything - the hearing isn’t the issue (though 55% of autistic individuals have some sort of hearing impairment). It’s the processing bit. When there are many sounds going on at once (or just many thoughts going on at once) it’s hard to focus on a specific voice and figure out what’s being said. We also get distracted easily which means we could miss the middle of a sentence and now we’re lost and… it’s not a fun time. I have a tendency to say “I’m going to focus on this thing” and I’m so focused on being focused that I forget to focus and then I miss it. It can also fluctuate - if I’m watching a documentary about my special interest, I will get every single word. If I’m watching a documentary about my special interest after I’ve had a meltdown, I will get maybe 75%. In a traditional school setting, it’s estimated that I get anywhere from 30-50% of what’s being said unless I have a migraine or am overloaded or tired, in which case it’s more like 10-15%. We tend to compensate for this by lipreading. I don’t need to all the time, but it helps a lot, especially with new people whose voices are unfamiliar to me. The best ways to help us is to face us when you’re speaking so we can read your lips and to minimize background noise so it’s easier to focus on what’s being said. Also being as clear and concise as possible is key. And don’t get frustrated if we don’t respond immediately - it takes some time to load and process.

Synesthesia

Watch my video about it here

This is a fun one! Since autism is caused by extra neuronal connections, we are more likely to have synesthesia which is an atypical connection between the senses. For example, I smell sounds. Super cool, right? There are also versions with specific letters having specific colors, numbers having genders, seeing sound, tasting colors, etc. The reason I’m telling you this is because if your child mentions something like “this color tastes like salt”, that could very well be a fully real experience for them. So validate it! (Also because it’s super cool.)

Memory

Watch my video about it here

The stereotype of autism is that we could sit down and name a thousand digits of pi and tell you what shirt we were wearing on September 10, 2019. And while I can do one of those things (it was a white button-up with birds on it), we also tend to have very bad memories. We are so detail-oriented that it’s hard for us to see anything outside of our current state. We also have a weird relationship with time since when we’re in hyperfocus mode it passes crazy fast and other times it slogs. So if you say “this thing is in five minutes” and I don’t have a clock, I have no idea how to know what that time frame is.

Anyway, I can’t speak specifically to autie memory because at the time I was beginning to learn about being autistic I was also diagnosed with a form of memory loss that is somewhat unrelated to me being autistic. But, in general, our brains are constantly full of a lot of things. So we will remember oddly specific details about something but completely delete an entire event. If I don’t have some kind of reminder (like a photograph or a journal entry or someone telling an anecdote) of a thing, I will forget about it until that thing causes an entire (and super in-depth) memory to come back. Because we have so much going on in our brains at one time, our working memory can be quite terrible. If you said “Hey Sydney, do the dishes” if I didn’t get up right now to do them or write it down on a sticky note, I would get reabsorbed into my project and completely forget. We also struggle with object permanence so we will lose our phones/water bottles/favorite stuffed animal constantly. I have multiples of many of my stim toys for a reason. It also means we may forget there is something on the stove and leave it to burn. But it’s also fun because sometimes I forget I have a dog and then I see him and I get very excited. Anyway, my sister has been using Tiles on the things she most often loses (each one is labelled from her phone so she can call them and if she loses her phone she can double click a Tile on an object and it will make her phone sing) and it’s been working really well for her so feel free to check those out!

We retain information best when it’s clear and concise, interesting, and when our sensory needs are met. We will also likely need reminders about things, but please do so kindly! My personal favorite is when someone leaves me a cute little note as a reminder because it makes me smile. In general, any sort of directions need to be written out (and, if possible, shown as well). I also like to journal every night to keep my days straight and my thoughts less scrambled. It’s helped me a lot with overloads because I only have to deal with one day at a time - everything else is in a book and I can go back if I need, but there’s no pressure to have to remember it.

Prosopagnosia

Watch my video about it here

Prosopagnosia is also known as face blindness and it really does not help the whole not-understanding-facial-expressions thing. It’s not the inability to see faces, but, rather, the inability to recognize facial identity. For example, if my mom dyed her hair, it would take me a long time to figure out who she is. It can also make movies confusing because every actor looks the same and it can make it hard to identify people in photos. Or, my biggest problem, looking in the mirror and mistaking myself for my sister and then getting promptly freaked out. To compensate, we memorize how people talk, how they dress, unique physical attributes (such as a mole or a twitch), hair cut & style, body shape, and how they walk (I can notice someone is pregnant about 2-3 months before they start showing because their posture changes). And if someone changes up one of those things, it is very confusing. This can also contribute to social anxiety because I have a hard time recognizing people out of context and I’m afraid of someone saying hi to me and not knowing who it is. You can help to mitigate this by greeting people with their name when they walk up so that they are identified and not getting offended if it takes your child a bit to get excited about seeing you - they’re going through a mental checklist to be sure it is you.

Executive Dysfunction

Watch my video about it here

Executive Dysfunction is also lovingly known as Can’t Do Task Mode™. From an outside perspective, it looks like we are lazy or avoiding something. But it’s not your average procrastination. It’s sitting on the couch and repeating to yourself “in ten seconds I will get up and start my homework” and then once the ten seconds is up being physically unable to move. It’s being literally incapable of changing tasks to do another thing. And I cannot express how enormously frustrating it is. I still have yet to find any sort of solution for this, but it’s nice to know that there’s a word for it. Just know that we aren’t trying to be rude by not doing the thing you asked us to. We literally cannot.

Chronic Pain

Watch my video about EDS/hypermobility here
Also here’s one about chronic fatigue
And one about chronic pain/dealing with doctors

As you know by now, autistic people are hypersensitive. So we will complain of pain frequently. That does not mean we are not in pain - it is very real. We are also two times more likely than the general public to experience chronic pain - some common ones include IBS, migraines, and EDS. Again, nothing to worry about, just something to be aware of.

Proprioception Errors

Watch my video about this here

Is your kid terrible at hand-eye coordination and the last to be picked for teams in PE class? Well, there’s actually a reason behind it. Autistic people are more likely to have Developmental Coordination Disorder & Dyspraxia - i.e. we are klutzy people who aren’t quite sure where we are in space and may have balance issues. And we know this and are intensely self-conscious about it. For example, sometimes my hands just stop holding a thing. I will be existing and holding a textbook and then all of a sudden it is on the floor. I have no explanation. Anyway, this may make it hard for your kid to do team sports (not saying it is impossible or they shouldn’t, just be understanding if they don’t want to do it) or sports altogether. Occupational therapy and physical therapy can help a lot with this one. Also letting them practice alone or do things with just one another person so they feel safe and not embarrassed. But uh… yeah I walk into walls sometimes. I know the wall is there, I do. And then I just miscalculate and go straight into it. Have to admit it’s hilarious though.

Rejection Sensitivity Dysphoria

Watch my video about it here

Of all the things that come with being autistic/ADHD, this one is by far the worst. You know that feeling when you realize you just locked yourself out of the house? Your ears go hot and you get an immediate pit in your stomach and you kind of want to curl up in a ball and hide from the world? Yeah, so for some reason our brains do that any time we receive rejection. Your goal was to walk through the dining hall correctly this time but you messed it up and someone politely reprimanded you? Well now you aren’t hungry and you feel like you’re going to cry or puke or both. You were hanging out with friends and made a suggestion and then someone said “wait, that’s not going to work”? Day ruined. Clearly they don’t like what you’re doing and you’re doing it wrong and you’re letting them down. It’s the only logical explanation. We know it’s slightly irrational so we’re too embarrassed to ask, but it feels just real enough that you’re sure they don’t like you. This feeling fuels our social anxiety and is generally the worst thing ever. I haven’t quite found a solution for it either, other than self-confidence, but even that doesn’t work sometimes. Just be kind and accepting because if you say you don’t like something we did, our brain will translate it into “you don’t like me and I am a failure of a person” and that thing will no longer become fun. I have no idea why this is a thing that we experience and I would like it to stop, but hey, now you know that it exists and you can roll with it.

Perfectionism

Well, if I’m just perfect, then I won’t have to experience rejection sensitivity dysphoria! Right? Well… in that case you just have both and become your own worst critic and never feel good enough but yeah, sure. We have a tendency to overachieve because we feel like that’s the only way we’ll be good enough. If we feel like we’ve achieved, then we’ll feel worthy. So we often procrastinate on important things, even on things we find enjoyable, because we’re afraid of failing. If a challenging task or situation comes up, we avoid doing it, even though we know it becomes even more anxiety producing the longer we leave it. We compulsively refine the smallest details to make things perfect, often at the cost of sleep or other important things. We also experience “analysis paralysis”, a cycle of overthinking and being overwhelmed because we aren’t good enough or there’s too much to do. And we are our own harshest critics.

So what can you do? When we are proud of something we did, be proud with us! That’s a big deal. Also, if we are stuck in analysis paralysis, help us to break it down into finite tasks that we can’t complete. We sometimes see a big project as something huge and overwhelming, but it’s not so bad once you break it down. (For example - I have wanted to make this page perfect so I have been avoiding making it for three days and it was making me quite anxious. But then I made an outline and added each section to a to do list that I am methodically checking off and now I’m having fun and getting the thing done!) Also encourage us not to use negative self-talk and to focus not on the final product, but on how much we’ve improved and all the important skills we’ve learned. No, that thing may not be perfect, but you’ve learned a lot since your last one and you should be proud of that!

Dealing With Change

…we don’t. Okay that’s a bit of a joke, but in general, we like routine. Repetition is safe in an ever-changing and overwhelming world. So when something changes, we don’t handle it very well. The best way to ensure for a better transition is to make it gradual and be clear about what to expect. For example, if I was about to change schools, I would visit a few times to understand the environment. I would also go on a day students weren’t there and I would wander around to understand the layout. I would also set up my locker beforehand, try on my uniform a few times, and try to make a friend or two. Then I am much better prepared for the first day of school - I know what to expect because I’ve been in the building before. I have my class schedule right in front of me and I know where the rooms are. I also have my locker as a grounding space, I know my advisor so I could go and talk to her if I felt overwhelmed, and I’ve worn my uniform a few times already so it doesn’t feel new and overwhelming. It means I am much less likely to overload and I can spend my energy on trying to make new friends and pay attention in classes. Take the unfamiliar, break it into small pieces, and make it familiar. With a few supports along the way. We can handle change, we just need some accommodations to make it better. It’s also important to be aware that if something we have been counting on or planning on changes, even if it’s only been for a few hours, we are likely to overload or at least get a little overwhelmed.

Also I made a video about why holidays/big days and vacations are difficult for me as an autistic person which might be helpful! You can find it here

Stubbornness & Impulsivity

The fact that we don’t like change means that we tend to be stubborn. Even if you prove our point wrong in a conversation, it takes a long time for our brain to begin to come around and reframe our idea to fit yours. We also often get stuck mentally or physically on a thing which can irritate other people because they want us to stop bringing up a certain subject when we can’t, our brains are stuck. In general, we are very factual people, so we can be very persuasive and often “dig ourselves into holes” because we want to prove our points. We also need factual reasoning, the “why” behind something, in order to make sense of it. Also, when we are anxious or overloaded, we tend to have an even harder time being mentally flexible. A lot of times people try to combat this with direct confrontation, but we won’t change our point of view and, often, there is some sort of underlying distress there.

We also have a tendency to be impulsive. Yes, I know, this makes no sense because we don’t like change. But it is still true. Some examples in my life include(d) impulsive spending - if I liked a thing, I would buy it. Which is fine in the dollar bins at Target. Not fine when your special interest is vintage fashion and every dress is $90. We also often want things done and over with so we will make quick decisions, impulsively say something rude, submit an unedited paper, or send an important email just get it over with. On the other hand, we can also be so indecisive it paralyzes us. But, in my experience, my impulsivity has gotten me in the most trouble. What has worked for me is rules such as “if it’s for a job or important thing, you cannot respond to an email within 12 hours” and "your cart has to stay open for 4 hours before you can purchase something” and “count to three before speaking”. These are different for everyone.

Alexithymia & Empathy

Check out my video on this here

Alexithymia literally translates to “lack of words for emotion”, also known as “I am feeling feelings but I do not know what feelings I am feeling please send help”. It essentially means that, contrary to popular belief, not only do we feel feelings, but we feel ALL the feelings. And we have no idea what they are, if they are ours or picked up from the environment, or how to handle them. On the outside, it may look like we aren’t feeling anything, but a neurodivergent person reads that as emotion while neurotypicals don’t. Also, in cases where we haven’t experienced what someone is talking about (or anything like it), we often cannot understand what their experience is like and therefore don’t feel any empathy. But we do feel sympathy and compassion for that person! Anyway, we tend to be “fixers” because when someone else is upset, we pick up that emotion too and we don’t like feeling upset so we want to fix it. According to some neurotypicals I know, this is “crossing boundaries if they don’t ask you for help”. In the autistic community it’s culturally assumed.

So how can you help? Well, help us put words to what we are feeling, especially when we’re overloaded! Simply saying “hey, you look stressed, do you need a break?” makes a bigger difference than you think. Cognitive Behavioral Therapy focuses on teaching you to talk things out and unravel what your thoughts are and what the root cause of those feelings might be and how to reframe them. Pairing that with a word bank tool such as the Feel Wheel and a comprehensive pain scale can help someone understand and their name emotions and then do something about them to make them less controlling.

Also, if there’s anything you take away from all of this, introspection issues are generally the root of all of our problems (other than, ya know, society being the worst) so these are the skills you should focus on most.

Relationships

Watch my video about it here

Traditional discourse for parents of autistic kids includes the idea that your child will never have good relationships and will always struggle. And I want to let you know that it’s not true. First of all because I recently (accidentally) made the switch to all neurodivergent friends and not only are they the best friends I’ve ever had, but the majority of my relationship issues magically disappeared. I’m also able to make friends with neurotypical people too, they just tend to be less accepting. Anyway, in my experiences with neurotypicals, there are four major things that we struggle with in relationships.

1. Friendship Degradation - You know how when you haven’t talked to someone for a few years and you no longer feel super close to them or like you’re best friends because you haven’t talked in years? Well we don’t quite get that. And since we struggle with object permanence, we will forget that people exist if we haven’t seen them in awhile and will therefore forget to contact them. And then when we do remember they exist, we think perhaps they are mad at us for ghosting them so then we just… don’t talk to them. For neurodivergent people, it’s generally accepted that we will forget about each other for a few weeks, remember the other one exists, talk nonstop for a few days, and then the cycle continues. Also we have no idea what constitutes a friend - is that person I met on the bus yesterday my friend? How about the person I’ve been texting for three days straight? Or the person I always sit next to in Bio? I have no clue.

2. Communication Errors - Sometimes we say things and they come out very mean. This is not the goal, words are just hard. Also, especially between neurotypical and neurodivergent people, it’s really easy to have miscommunication. And then someone is mad, but we don’t always notice it, and it’s a whole hot mess. Please just be direct and honest with us, I beg of you.

3. Coming On Too Strong - So we have this tendency for a new person to become a special interest. We just get really excited because, thus far, this friendship is going great and we want to get past all the “getting to know you” bits so we can get to the friend bits. Not to mention that we get so excited we can’t stop thinking about them. Some people see this as sweet and caring and loyal and passionate and whatnot; others see it as being “too much”.

4. Boundaries - This is the biggest issue of them all and it ties in to the fact that we are statistically much more likely to be in abusive friendships and relationships. First of all, when people set boundaries, it is rarely phrased as “I am setting a boundary and it is…” or “I would like if you stopped doing ___ because it makes me feel ___”. So you may have thought you’ve set a boundary with us and we have no idea. We also have a hard time setting boundaries because we are so used to masking and feeling uncomfortable so we don’t realize when the discomfort is more than usual. On top of that, because autistic people are very used to our boundaries being violated so we don’t realize when we do that to other people because, to us, it’s just normal life.

While we’re talking about abuse things, we’re also very used to being gaslit and told that what we’re feeling isn’t real and that we’re too sensitive. That isn’t anything to be worried about, just aware of. In my life I’ve had a lot of really manipulative people be terrible to me for months until someone else went “hey, so they’re faking being your friend” and then all the pieces clicked into place. We genuinely think everyone has the best intentions. It is also difficult once we’ve acknowledged that someone is an abuser because we don’t deal with change well - not only do we have to reframe that person in our heads as the one that they proved themselves to be, but we also have to change our lifestyle to cut them out of our lives. And that is very, very difficult.

I made a video about how to spot and handle gaslighting which is a great tool for older kids! You can find that here

Also I’m working on a series that goes teaches social skills (like boundary-setting) in a neurodivergent-friendly manner (cause social skills therapy can be rough) which you can find here

Sex & Sexuality

Ah! You don’t want to think about sex in regards to your kid, I know, but it’s important nonetheless. There is this whole idea that autistic/disabled people don’t need proper sex ed because we aren’t sexual beings and uh… yeah so plot twist we also have sexualities! In fact, some autistic people use sex as a form of stimming. We are also 3-5 times more likely to be LGBTQIA than the non-autistic population. And not just the asexual/aromantic bit, though that is very common. Trans and nonbinary people are also six times more likely to be autistic. This is all generally assumed to be due to the fact that autistic people don’t roll with social norms and gender norms the way the rest of the world does. So, as if you needed another reminder to be accepting, be accepting! And open to them questioning their gender and sexuality! And please give them proper sex education.

Watch my video about autigender here
and my coming out video as gender fluid here

Grown-up Books

History

• NeuroTribes by Steve Silberman

• Asperger’s Children by Edith Sheffer

• In A Different Key by Caren Zucker and John Donvan

Experience

• The Reason I Jump by Naoki Higashida

• Autism in Heels by Jennifer Cook O’Toole

• Sisterhood of the Spectrum by Jennifer Cook O’Toole

• The Asperkid's (Secret) Book of Social Rules by Jennifer Cook O’Toole

• Funny, You Don't Look Autistic: A Comedian's Guide to Life on the Spectrum by Michael McCreary

• Loud Hands by the Autistic Self Advocacy Network

• All The Weight of Our Dreams: On Living Racialized Autism by the Autistic Women & Nonbinary Network

• Not Even Wrong by Paul Collins

• Stim: An Autistic Anthology edited by Lizzie Huxley Jones

• Sincerely, Your Autistic Child by the Autistic Women & Nonbinary Network

• Fearlessly Different by Mickey Rowe

Movies, Talks, & Shows

General age group for this is ?over age 13? I guess?

• Tony Attwood’s talk (please watch this one ASAP it’s incredible)

• Everything’s Gonna Be Okay on Hulu

• The Reason I Jump

• I Am Greta

Things to share (with your little)

Watch

• Loop on Disney+ - this is an animated short about (& played by) a nonspeaking autistic girl

• Meet Julia — (note that she is now funded by A$, but she was originally funded by ASAN so the earlier stuff is great representation, especially for kids)

• This isn’t specifically about autism, but growing up my favorite (and for most autie kids) movies were animated ones with songs or 1950s movies with songs like Singin’ In The Rain (I also loved Andy Griffith) because the humor and facial expressions are very obvious and the plots make sense. So if you’re at a loss for what they might like, try those out. Just beware - I used to watch Singin’ In The Rain three times a week for years (you may unleash a monster. A happy monster, but a monster nonetheless)

Books

Picture Books

• All My Stripes by Shaina Rudolph

• Thank You, Mr. Falker by Patricia Polacco

• Lena’s Shoes Are Nervous by Keith Calabrese & Juana Medina

• Junkyard Wonders by Patricia Polacco

• A Friend Like Simon by Katie Gaynor

• All About My Brother by Sarah Peralta

• My Brother Otto by Meg Raby

Chapter Books

• The Curious Incident of the Dog in the Night-Time by Mark Haddon

• Anne of Green Gables by L.M. Montgomery

• Extremely Loud & Incredibly Close by Jonathan Safran Foer

• Counting By 7s by Holly Goldberg Sloan

• Rain Reign by Ann M. Martin

• A Mango Shaped Space by Wendy Mass (this one is about synesthesia!)

• Al Capone Does My Shirts by Gennifer Choldenko

On the web

Instagram Accounts

• The Autistic Life

• The Autisticats

• Autistic Park Ranger

• Access Guide

YouTube Channels

• Me!

• Yo Samdy Sam (late diagnosed YouTuber)

• Autmazing (YT channel with autie mom & kids)

• Paige Layle

• Princess Aspien

• For the Love of Gabe

Websites

• My full resource guide

• My ableism & accessibility guide

• My “Help! I think I’m autistic!” guide

• Musings of an Aspie blog

• Special Books by Special Kids

• Autistic Self Advocacy Network

• Autistic Women & Nonbinary Network

Music!

I also curated an #ActuallyAutistic playlist on Spotify made of entirely autistic musicians/artists which you can listen to here