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.

By the Way, You're Autistic

"Even if you think a lie is helping, it usually ain't.

Someday that person'll learn the truth,

and you'll have to look him in the eye."

~Kyle Hyde, Hotel Dusk: Room 215

Every time I hear a parent worrying about how to tell their child they're autistic, or worse, announce that their kid doesn't need to know yet, I cringe a little. Although they may mean well, it all comes from the same thought process: that being autistic is bad, that it's at the center of all their problems.

It's not. Autism is just autism. If you're looking for a sign, this is it: let your child know they have autism. Today.

You aren't doing your kid any favors by hiding it from them. If they socialize at all with other people in the world, and especially if they're in school, I guarantee you THEY ALREADY KNOW.

Now, I don't mean they know they have autism, but they know that something is different about them. I was twelve years old before someone saw my symptoms for what they were, and that evening I went home and did as much research as I could manage. Not because I was afraid, but because it was freeing.

I found the criteria from the current DSM and took tests and read, read, read. By the end of the week, I knew (side note: I was later officially diagnosed by professionals). Rather than being afraid, I was grateful for the "label" of autism. I realized there was a reason I seemed so much different from my peers, didn't always understand what people were saying, and had trouble regulating my tone and body language. Not only that, but I wasn't the only one who was like this. There were thousands of people out there just like me, and the autistic community was out there, happy to welcome me with open arms.

Finding out about autism can be a huge relief, whether you're the one who discovers it or someone else tells you.

Yeah, but...how do you do that? What if it makes him think less of himself? What if it leads to her not trying as hard and using her autism to excuse that?

We aren't born understanding disability. We get a sense of it from the people around us and from society. It's the same as anything else. Chances are, if your child is fairly young, they don't even really know what the term means.

You don't have to say it in any special way. Just tell them. There's no need to overload them with information - just say it, and wait for a response.

For example, you might say something like: "Do you remember we talked about how when school starts, you're going to be in a special class? You're going to be in the special class because you have something called autism."

If the child asks what that means, you can give them a brief, age-appropriate explanation. Make sure you don't portray autism as wholly bad. Doing so is extremely detrimental to someone's self-esteem. We're autistic for life, and it affects everything right down to how we think and feel. Autism isn't a "bad guy" or "monster" in our heads, it's just something that makes us different.

That's actually one good way to approach it with kids. "Autism is something in your brain that makes you think differently. There are lots of other people out there who have autism. Some of them are kids your age, and some of them are grown up. If we get to know other autistic people, we'll know more about the way you think, and some of them could become your friends, too."

If you focus on the "can'ts," so will your child. If he grows up constantly hearing, "Oh, he can't do that. He's autistic," pretty soon it'll be him saying, "I can't do it because I'm autistic." That is where using autism as an excuse comes from. Autism should be an explanation, not an excuse. Kids take their cues from their parents. Focus on how you portray autism, and they'll pick it up.

As always, books are a great resource for helping kids learn more. Here are a few recommendations:

• I Love Being My Own Autistic Self! by Landon Bryce. This is a great introduction to what autism is, and explains it in a way even younger children can understand. It portrays different points of view from both autistic and neurotypical characters, with the emphasis on the neurodiversity movement.
• Different Like Me: My Book of Autism Heroes by Jennifer Elder. The book recommends itself for kids between the ages of eight and twelve. Plenty of famous and important people from history are detailed inside, both their accomplishments and how autism affected them, even though the term "autism" wasn't around when many of them were living. (Note that this book does use the outdated term of Asperger's, but it would be suitable for kids who fall anywhere on the spectrum.)
• Loud Hands: Autistic People, Speaking by Julia Bascom. Perfect for autistic teens and adults, this is a collection of essays written by and for those on the spectrum. There are plenty of different perspectives offered, and so many topics are covered. It's even published by the Autistic Self-Advocacy Network, which is a great resource.

It's time to tell your kids that they belong to the autistic community. We'll be waiting to welcome them, regardless of age or ability.