Social Handbook: An Open Response to "Jack's Manual"

"[Y]ou will get a little bit faster every day

until you're the best around."

~Rudy, Animal Crossing

A few days ago, someone on a social media site I frequent passed along this link to a blog post. It's written by a mom discussing her eleven-year-old autistic son's difficulties in interacting with others. At the end, she enclosed a list of social rules titled, "Jack's Manual."

I know the mom writing the original post was trying to help, and that she meant well.  Despite that, as I read this list, I couldn't help but feel that my eleven-year-old self would have been even more confused after reading it. (Heck, I'm eighteen now and I still had to ask my mother for help understanding the reasoning behind rule #12.) That's why I thought it might be helpful to use "Jack's Manual" as a jumping-off point for this blog post: part of a social handbook meant for other autistic people.

The original text is in bold, with my additions/subtractions in bold italics and strikethroughs, and the reasoning in plain text.

1. When you are searching for an answer to a question, take your time if possible. Try not to get frustrated. Ask for help if you need it. You can usually take your time, but not always - such as if you're in school or at work and a time limit has been specified. This is a skill that comes with practice. Try not to get frustrated, because it's not a good feeling, but know it's a normal emotion all people go through. Also know that there's nothing wrong with asking for help. Anyone who tells you otherwise is bullying you.
2. I will wait for you. I will make sure other people wait for you. I will teach you how to ask other people to wait so you don't always have to rely on me. Having someone who will accommodate you is important, especially when you are young (as some adults just won't listen to children). Learning how to ask for accommodations yourself is a small way to become more independent, and needs to be learned as you get older.
3. Smile when someone gives you a present. Even if you have it already or you don't like it or need it–just smile and say thank you. I've found, "That's so thoughtful! Thanks!" usually covers it. If it's obvious you already have the same thing (such as at a birthday party where two people give you the same gift by coincidence), you can say something along the lines of, "Well, now I have a matching pair!"
4. Never ask if someone is pregnant, or on a diet, or getting divorced. The first two are usually interpreted as telling the person they're fat. The other means you're being too nosy about someone else's relationship, which is generally not appreciated by neurotypical people (NTs).
5. Always When it's appropriate, ask if someone needs help. If someone looks like they're having trouble carrying something, for example, offer to assist them. Open the door for them if their hands are full. Always asking if someone needs help, however, can be misinterpreted and viewed as insulting. If you're not sure, you can usually just say something along the lines of, "Let me know if you need any help."
6. Hold the door for the person behind you in the grocery store or the library or the mall when it is sensible. Hold the door if the person is only a few steps away, because it's a kind thing to do. Don't hold a door for someone across the room, because it makes NTs feel awkward. The only exception would be if their hands are full, or possibly if they're a wheelchair user. You don't need to hold an automatic door no matter the circumstances.
7. Don’t eat salsa off of your chip and then dip it back into the bowl again. It transfers your saliva from the chip back into the bowl of salsa, spreading germs.
8. Don’t swear. Swear sensibly. Those words make people uncomfortable, and they aren't polite. Even so, you can't really avoid them. They're on TV, in books, and at school (especially at school). Trying out swear words is just part of growing up, but it's important to know the proper time and place to use them. In a formal setting, swearing is not a good idea. If you're with friends, it's more acceptable - but swearing is something that should be reserved for when you're extremely angry or upset. Throwing those words around all the time is rude no matter who you're with. Don't use slurs, as they exist only to hurt other people.
9. Whisper in the library, and respect their other rules, too. If you want to go to a public place, you have to respect their rules or you won't be allowed to go there next time. Whispering in the library (so people can concentrate on what they're reading) is just one example.
10. Whisper in the movies. See #9 (although I've always been told not to talk at all in the movies, but maybe this person knows something I don't).
11. Whisper in the morning. Respect the wishes of those you live with/nearby. I believe the reasoning behind this point was that people might still be sleeping in the morning, but that doesn't mean you have to whisper all the way up until noon. If the people you live with are awake, and you're not violating your building's (or neighborhood's) rules on quiet hours, you don't have to make a point of being extra quiet.
12. Please, when it’s your turn to bake the cake, bake the cake. Do everything in your power to figure out what is expected of you. (This was in reference to an article that mentioned, in part, an autistic adult whose workplace would have one person bring in cake every Friday. He ate the cake that other people brought in, but didn't realize he was expected to volunteer to bring a cake himself some weeks.) NTs expect you to know unwritten rules without them saying a word about it (how this works, I have no idea). Usually they won't mind if you ask, though. If one person brings in cake on Friday, it's probably just a special treat, but if it happens again the next week, approach them and ask if you're expected to take a turn as well.
13. Before you say something doesn’t taste good or look nice or sound pretty, take a breath and remember that is autism’s voice trying to talk. Use your voice instead.* find something positive about it and say that, unless you have been asked to do otherwise. If someone asks you to help them with a homework assignment, or they specifically say something along the lines of, "Please give me your honest opinion," they usually want to know the flaws. But if someone makes you a meal, gives you a present, or is showing something they did, they don't want to hear if it's awful. Say it has nice colors, or is a pretty shape, or that it looks like they worked hard on it. Otherwise, it can be hurtful.
14. Be good, be kind, be respectful, but most importantly, be yourself whenever you can. Harsh truth incoming: in today's world, the overwhelming majority of society will be uncomfortable with you doing anything that makes it clear you're autistic. As autism rates increase, I very much hope the world will learn to accept us, but for right now there are precious few places you can be yourself. Take advantage of them.

* I'm not even sure what this bit about "autism's voice" vs. "your voice" is supposed to mean. You can't separate a person from their autism. There is not a different person "hidden" behind the autism somehow, this is part of who we are and quite frankly, anyone who referred to something I said as "autism's voice speaking" would not be my friend after that. Period.

If anyone would like to suggest further clarification or corrections, I'm certainly open to hearing them.

"Autistic" Is Not a Four-Letter Word

"A gentleman pays attention to his manners.

In every setting."

~Hershel Layton, Professor Layton and the Diabolical Box

In communities of disabled people and their allies, there's a clear divide about one part of language. It concerns which is preferable: person-first (e.g., "person with autism") or identity-first ("autistic person"). Some groups almost universally agree on one, while others are more split. The autistic community falls into the second group.

I've heard plenty of arguments about why we should always use person-first language. You aren't defined by your autism. Autism is just PART of you. Saying "she's autistic" only focuses on the things you can't do. We want everyone to know you're a person before anything else. It's just to emphasize that you are not your autism.

But I prefer to be called an "autistic person" rather than a "person with autism." Let me show you why.

Here's an exercise: please describe the person in the photo below using five words or less.

Source here

So what did you come up with?

Blond boy. Why are we fine with saying it that way and not insisting he be referred to as "boy who is blond"? After all, being blond is just part of who he is, and it certainly doesn't define him. Nor does saying "he's blond" focus on the fact that he isn't a redhead.

Young boy. Same story here. This is even less defining than the above. A blond person is only blond until their hair starts turning gray, and a young person is only young until they get older. An autistic person is autistic their whole lives. Why are we fine with saying "young boy," a label that will only be applicable for a little while, and yet hesitate to say "autistic boy," something that will always be true about that person?

This isn't the end of it. Why can we refer to someone as an "intelligent person," a "left-handed person," or an "athletic person" and have no problem with it - but then as soon as autism comes into the picture, we suddenly need help remembering they're a person? It all seems to come back to the idea that autism is some terrible, awful thing that no one would ever want to be associated with. There are parts of autism that are bad, and parts that are good, but the way I see it, we're stuck with it. Why not look at it positively?

Boy on a swing set. Once this boy gets off the swing set, he'll still be the same person. The boy and the swing are separable. That isn't the case with autism, which is hard-wired into a person's brain. If you took away my autism, you'd have to take away all of me with it. You can't just remove the "autistic parts."

Because of the nature of autism, it affects a person right down to the way they think and feel. It's different than if you were to say, for example, "a person with HIV." If you could remove the HIV from a person, you'd still have the same person. They are separable. (And this is putting aside the fact that HIV/AIDS ultimately kills, which isn't comparable to autism at all....but I digress.) Even if it were somehow possible to remove the autism from a person, that person's mind wouldn't work the same way afterwards. It's not a side dish or an accessory.

Now, I know my opinion isn't the only one out there, nor is it better than someone else's. So if I came across someone who preferred being called "a person with autism," of course I would respect that and refer to them appropriately. Along the same lines, knowing whether to use identity-first or person-first language doesn't mean you don't have to be conscious of what you're saying. As a general rule, if you aren't sure, swap in another adjective and see. Just as it's not polite to refer to someone as "that Russian kid," nor is it polite to call them "that autistic kid."

But at the end of the day, autism is just autism. It's not automatically a terrible thing, it's just part of who we are. And as long as we aren't afraid to say "blond boy" or "young boy," nor should we be afraid to say "autistic boy."

People should not be ashamed to represent exactly who they are, and which parts of them will always remain. And that, of course, is where autism falls into place quite neatly.

What to Do after an Autism Diagnosis

"It doesn't feel real.
But I'm not gonna let it phase me."
~Samantha Greenbriar, Gone Home

A lot of people find it overwhelming when the diagnosis of autism becomes official. Some of us already knew and just needed it from a professional; others are completely blindsided and fall apart, with no idea what to do next.

Before I address that question of what to do after the diagnosis, I want to tell you something. An autism diagnosis does not change a person. Let me repeat that. An autism diagnosis does not change a person. You are the same person today with your diagnosis that you were yesterday without it. The only difference is that now you know what you have, so you can learn more about it, find other people with it, and understand more about how to help yourself. Diagnosis is a good thing.

Your environment - past or present - did not cause this. Nor did your parents' style of raising you. Babies show signs of autism as early as a few months old (source). If you're autistic, you have always been autistic. You just didn't know it yet.

What you do after the diagnosis depends on age. But before I get into this, let me just say one more thing: if you don't feel comfortable doing this right away, that's okay. Take a few days or a week, get used to the idea of having autism, and then go forward. A week is not going to make a difference in the grand scheme of things, but your attitude very well might. Services cannot really help you if you're not willing or ready to be helped.

If you're a parent of an autistic child, be aware that your kid will take their cues about autism from you. If you associate autism with stress, so will your child. The reason this is so critical is because you are capable of removing yourself from the autism (whether or not you choose to is a different story). They are not.

Toddlers and Preschoolers

Services for kids between 18 months and 4 years are pretty widely available. The professional who diagnosed your child may be able to tell you what would benefit them most, or you may have to look into additional assessments. If your child is younger than three and you're in the US, this is typically done through a child and family center, or independent programs. Three- and four-year-olds are given services through the school district, even if they aren't in preschool.

Some services are covered by insurance, others are not. Your options are likely to include:

1. Specialized preschool. In some areas, your child may be eligible for free or reduced cost preschool.
2. Feeding therapy is available for children age three and under who have difficulty in this area. With a slightly older child, a visit to a private therapist or children's hospital may be necessary.
3. Speech therapy if there is a significant speech delay or other issues.
4. Tools such as AAC devices are covered under most insurances if your child could benefit from one.
5. Occupational therapy to help with fine motor skill development and very basic self-care skills, like feeding oneself.
6. DIR or floortime therapy to assist your child in reaching developmental milestones.
7. A designated session with a therapist or with other children to practice social skills. For example, the therapist may guide the children through the steps to a successful conversation. ("Matthew, that's great that you shared how you spent your weekend. What could you ask so that others have a chance to join in?" If he's unsure: "Can you ask Sarabeth how she spent her weekend?" And so on.)
8. Your child may be eligible for a service dog. Resources are here, here, and here. You can also search for programs in your region here.
9. Applied Behavioral Analysis (ABA). This is very controversial among the autistic community. Some children improve tremendously, while others have suffered abuse and come away worse off than they were before the therapy. If you feel ABA would benefit your child, please keep an eye out for warning signs. See my post here, and an analysis by a parent over here.
10. Look for research studies in your area that may be able to further autism services, and help you and your child.

Pick up An Early Start for Your Child with Autism for yourself. The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) may benefit you, but is not really accessible to your child at this point.

At this time, I have not been able to locate any resources geared to very young children that do not show autism in a wholly negative light. UPDATE 10/2015: The show Sesame Street now has an autistic character, and offers information on her disability. Resources available here; the storybook in particular is very accessible to young children.

Elementary School

Once your child enters kindergarten, you will need to be informed about your rights in regards to their education. There's a lot that can be done to help your child succeed, but you may have to request it specifically. Look through the district handbook, as these vary between states and districts.

If your child attends public school, the school is legally required to provide a free appropriate public education in the least restrictive environment. This means you cannot be charged for services given through the school. Although the district cannot force your child to attend special education classes until all other options have been exhausted, it may be recommended. Some kids are mainstreamed, others attend special education all day, and some spend part of the day with typical peers and part in special education.

Your options may include:

1. A 504 Plan if your child can be mainstreamed but needs services to succeed, or an IEP (Individualized Education Plan) if your child would learn better in special education classes.
2. Special education classes if necessary.
3. A specialized summer camp or extended school year can be written into a child's IEP. This is different from summer school, and will vary depending on your child's abilities. Stay educated on your rights and options, particularly when the time comes to transition to middle school.
4. Life skills classes to prepare your child for living independently one day. Your child might learn how to make a bed or load a dishwasher.
5. Speech therapy if there is a significant speech delay, or related issues such as stuttering.
6. Tools such as AAC devices are covered under most insurances if your child could benefit from one.
7. Occupational therapy to help with fine motor skill development and basic self-care skills, like getting dressed independently.
8. DIR or floortime therapy to assist your child in reaching developmental milestones. Note that this may not be an option in the later elementary school years.
9. A designated session with a therapist or with other children to practice social skills. For example, the therapist may guide the children through the steps to a successful conversation. ("Matthew, that's great that you shared how you spent your weekend. What could you ask so that others have a chance to join in?" If he's unsure: "Can you ask Sarabeth how she spent her weekend?" And so on.)
10. Your child may be eligible for a service dog. Resources are here, here, here, and here. You can also search for programs in your region here.
11. Applied Behavioral Analysis (ABA). This is very controversial among the autistic community. Some children improve tremendously, while others have suffered abuse and come away worse off than they were before the therapy. If you feel ABA would benefit your child, please keep an eye out for warning signs. See my post here, and an analysis by a parent over here.
12. Look for research studies in your area that may be able to further autism services, and help you and your child.

Good books for yourself include How to Teach Life Skills to Kids with Autism or Asperger's and Autism: A Practical Guide for Parents. 

Good books for your child include My Autism Book, The Asperkid's (Secret) Book of Social Rules, I Love Being My Own Autistic Self!, and Different Like Me.

You can also share the information in the book The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).

Middle and High School

Services outside of school are fewer once you reach middle school, but there's still plenty through the school system. A lot of it will depend on your area and schooling situation.

If you attend public school, the school is legally required to provide a free appropriate public education in the least restrictive environment. This means your parents cannot be charged for services given through the school. Although the district cannot force you to attend special education classes until all other options have been exhausted, it may be recommended. Some students are mainstreamed, others attend special education all day, and some spend part of the day with typical peers and part in special education.

Your options may include:

1. If you are at least 14 (16 in some areas), you may attend basic job training. Work experience is also offered at some schools, either at the school or at an outside location.
2. A 504 Plan if you can be mainstreamed but need services to succeed, or an IEP (Individualized Education Plan) if you would learn better in special education classes.
3. Special education classes if necessary.
4. A specialized summer camp or extended school year can be written into your IEP. This is different from summer school, and will vary depending on your abilities. You and your parents need to stay educated on your rights and options, particularly when the time comes to transition to high school, post-secondary education, or college.
5. Life skills classes to prepare you for living independently. You might learn how to do laundry or make easy meals.
6. Speech therapy if you have a significant speech delay, or related issues such as stuttering.
7. Tools such as AAC devices are covered under most insurances if you could benefit from one.
8. Occupational therapy to help with fine motor skills and self-care skills, like performing basic household chores.
9. A designated session with a therapist or with other students to practice social skills. For example, the therapist may guide you through appropriate dialogue. ("Caroline asks if you want to go to the movies this weekend. How could you tell her politely that you don't want to go? What if you do want to go, but on Friday, your parents ground you for something you did? How could you tell her?")
10. You may be eligible for a service dog. Resources are here, here, and here. You can also search for programs in your region here.
11. Applied Behavioral Analysis (ABA) is not generally started at this age, but may be continued if you were receiving it when you were younger.
12. Look for research studies in your area that may be able to further autism services, and help you and your family.

Past the age of 18, some adults attend a post-secondary school to help them further their life skills. Services will still be available to you through the school district until you reach age 22.

Good books for yourself include Different Like Me, Middle School - The Stuff Nobody Tells You About, and Preparing for Life.

Good books for your parents include How to Teach Life Skills to Kids with Autism or Asperger's, Girls Growing Up on the Autism Spectrum, and Adolescents on the Autism Spectrum.

You can also share the information in the book The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).

Adults

Unfortunately, once you graduate from high school or post-secondary education, there are not as many services available to you. This is one of the flaws of the system today, but that doesn't mean there's nothing you can do.

Some services are covered by insurance, others are not. Your options may include:

1. Job placement, or a spot at a workshop where you will be able to start your career and get paid fairly.
2. If you live in the US and are unable to work due to autism, you can apply for disability payments. A thorough guide to doing this is here (don't be fooled by the design of the site; the information is still applicable to anyone applying for disability). Sorry, I'm not familiar with resources from other countries in this respect.
3. If you are in college, your 504 Plan or IEP from high school can follow you. Contact your disability office and find out how they can help.
4. Tools such as AAC devices are covered under most insurances if you could benefit from one.
5. You may be eligible for a service dog. Resources are here and here.
6. Live-in caregivers if you are able to move out but need help with your day-to-day life.
7. Group homes if you need more intensive help with your day-to-day life but are not able to live with your parents.
8. Look for research studies in your area that may be able to further autism services and help you.

Books to look into include Look Me in the Eye, Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder), Living Independently on the Autism Spectrum, and Loud Hands: Autistic People, Speaking.

I'll be updating this post in the future if and when I learn more. If you know of any resources not included here, please feel free to leave them in the comments to help others.