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"After the IEP meeting with the state lawyer they stopped locking him in the room and started finding work-arounds. Although some of these solutions didn’t feel right either. The teacher told me, "Stuart came into school this morning, said I don't want to be here, so he punched me and to de-escalate I gave him an iPad." It didn’t feel right. We're in supposedly one of the best school systems in the country. We rank really high and people move here specifically for our special needs programs. It just wasn't working. Eventually, middle school comes, and once again it's a big transition and I'm fighting for more supports."
This 96 page book contains stories from parents of kids with Asperger's & Autism that share their experiences while they try to navigating the confusing world of dealing with the school system. Within these pages, you'll find advice, inspiration, hope and perspective as you read the stories of other spectrum families going through similar struggles.
We've collected these stories because, while there is a ton of books out there telling you what to do (or more accurately, usually they're telling you what you are doing wrong), there are very few books that simply share the stories and perspectives of other families. It's our hope that this book helps you to realize that we are truly all in this together, and you aren't nearly as alone as it may seem.
The people at Asperger Experts, who curated & edited this book, are the world's largest organization by & for individuals & families on the Autism spectrum. Every day they help thousands of families, teens, young adults & professionals navigate the complex world of Asperger's & Autism with real, first-person accounts & advice from people who've actually lived it and are diagnosed with Asperger's themselves.
"I had never ever planned to homeschool, and the therapists were dead against it because of the social aspects of school. But Stuart really, really hated school: he hated the people, he hated the kids, he wasn't socially interacting with anybody, he hated the environment. So I decided to listen to what he was communicating, and we homeschooled him."
"Andrej joined a basketball team in sixth grade, and some of these kids were really, really good basketball players, but he just wasn't super coordinated so they were teasing him all the time with "You're not good enough to play with us." "I don't know why you're trying to do sports." "You're not cut out for it." It basically destroyed his self-esteem. He stuck with it in eighth grade because he liked to play basketball, but it just got worse. "You're never going to have a girlfriend." You're so ugly." So I think the bullying is what changed things a lot."
"The school was still refusing to work with us. I was calling the disability law lawyers office every day for months, until I finally got a free disability lawyer. I wanted what was right for my son. I wanted the accommodations. I wanted him to have a regular school life. I came at that school with everything that I had. We had advocates and lawyers. When we had IEP meetings, there must have been twenty people in that room. They finally took him out of the school and put him in a school specifically for autistic kids."
"The school really hadn't done a whole ton yet and I really was starting to think that I might have to get a lawyer or sit in and observe because I was getting nowhere. Then, Zander's therapist had me fill out this letter to give to the school that had specific language in it saying that you are aware of the disability act and are requesting your child to be tested. As soon as I sent in that letter, he had an appointment probably within two weeks with a pediatric neuropsychologist."
My name is Katrina. I am the mom of a fourteen-year-old named David who was diagnosed with ASD at age nine, and we live in the UK.
When he was in nursery school he was very hard to keep in a group and would get very distressed if things changed quickly. So if a nursery nurse didn't give him advance warning of something changing or if he didn't think something was fair, he'd get very upset and would have a tantrum, which was often seen as a behavioral problem, not a sensory or emotional one.
When he was about four, we went to a natural history museum. We were in the geology area looking at plate tectonics and how the movement of the plates creates volcanoes, and the next day when he went back to nursery he repeated what he learned at the museum to his nursery teacher. He was a very clever and bright child.
He was also quite a naughty child. He wasn't good at behaving as expected and would often get upset at things. Likewise in the home environment. We used to have to tell him, "We're going out now. Can you just turn the television off, get your shoes on and let's go." He would throw the biggest tantrum in reaction to things like that if he thought it wasn't fair.
When he got to school he started to struggle a little bit. He's quite tall; he's in the 97th percentile so he always looked older than he actually was, but behaved younger or presented younger than his actual age . . . which is kind of confusing and not very great when you're looking for acceptance amongst other people.
My name is Ramona. I have two sons and they're twenty-three and twenty-one right now.
When my oldest son was about to turn two, I joined a playgroup with him. When we went to the playgroup, all the other kids were playing with each other and fighting for toys and interacting with one another. He was just grasping at the one toy and walking around the perimeter of the room humming. I had never seen him do that before. I actually have a master's degree in rehabilitation counseling, and I have worked with people with various different disabilities for years and years, so I had worked with autistic individuals before.
When I saw him that day, he wasn't speaking at the level that he should have been speaking. I came home and I said to my husband, "Derek was acting autistic today." My husband said, "What are you talking about?" So I started describing what our son was doing, and that was the first seed planted in my head, telling me that maybe I need to look a little closer at things.
A couple of months went by and I got him an evaluation. Twenty-one years ago at the time of that evaluation, I was afraid of Autism. In the 1980s I had learned in college through my special ed classes about refrigerator moms and how Autism was a result of them not being affectionate enough with their kids. I thought of a kid who was going to be locked in his own world and never be able to relate to another person or have any empathy. I know now that none of that is true, but all that time ago those were some scary thoughts. There weren't a lot of resources since back then it was like 1 in 10,000 kids were being diagnosed with a strong medical model "fix them" kind of mentality.
He used to play this game where he had these little balls that you would drop into tubes and they would do different things. Instead of playing with the tube part, lots of times he would take the ball, and drop it on different surfaces in our house, while listening really closely to the different sounds the balls made depending on the surface. He loved the different sounds. I thought it was so smart and interesting that he was so focused on the different sounds. I remember thinking the day before he was diagnosed that it was the greatest thing ever.
The day after the diagnosis, he started to play that game, and I stopped him because instead of it being this really cool game, in my mind it became autistic. I stopped him from playing his favorite game because of what I symbolized it as. It was out of fear. I wanted him to stop being autistic. That sticks out in my mind, because I still regret it and know that I would never do that now.
Hi, I'm Jessica. I'm from Maryland and I have three kids. Steven, who's nineteen and on the spectrum, Hannah, in the middle, is neurotypical, and Stuart is sixteen and on the spectrum.
To me, our story highlights that it's not a one-size-fits-all situation. So much so that after the first eighteen months of Steven's life, when Stuart was born, I would have sworn up and down he wasn't on the spectrum. My idea of the spectrum was Steven and my experiences with him. So when I had Stuart I thought, "There's no way he's on the spectrum because he's totally different from his brother." I even missed the similarities. School was just as much a different story for both of them and it highlights to me how individual people are—their circumstances, how they're made, what makes them tick, and even how the school interacts with them. Even crazier, my neighbor two doors down the street has a son on the spectrum the same age too, and if you ask her what she thinks of our county school system, her story would be completely different from mine. Nobody, even in the same county, has the same story.
Kids are individuals, and our stories started out really rocky. The magic diagnosis didn't come. We've had a million diagnoses. We've had tons of doctors, tons of opinions. We've gone up and down on what they have, and that drives the school system in terms of the supports they are giving and what they do. That itself has been very difficult.
Both Steven and Stuart started with in-home services and people coming to my house for occupational therapy, speech therapy, behavioral therapy, whatever therapy.
When Steven started school, he was in a multiple intensive-needs program at about age two or three. It worked out mostly until he went to kindergarten and the team labeled him as possibly low-functioning autistic, telling me that "He's not going to talk, he's not going to be aware that anyone else exists. He's not going to be anything." My pediatrician told us that he's going to be in a group home one day.
I'm Maria and my son's name is Andrej. He was diagnosed on the spectrum when he was about seventeen or eighteen, so a little bit late.
He initially was diagnosed with ADHD when he was five and he struggled in school with the typical ADHD things like restlessness, difficulty focusing, and things like that. We got him on some medication and things actually went really well until seventh grade, and then everything fell apart. He was actually a straight-A student up until that point. In seventh grade he moved to the middle school and he started having issues. He wasn't doing homework, wasn't paying attention in class, he was being disruptive. We struggled with the teachers, because a lot of them told him he was just being lazy and didn't offer him help.
I actually didn't even know there was a problem until I got one of his midterm report cards, and he was failing every single class. He hadn't turned in any homework, so we sat down, caught up on all the homework, but then we had the same exact thing happen the next semester. He didn't do a thing, and we ended up sitting on the couch doing homework for a whole weekend trying to catch up.
We started talking to the teachers, and they all just basically told me that he was a bad kid. "He didn't care about school." "He didn't pay attention in class." "He was lazy." "He didn't really care about the feedback that he was getting in class." At that point we were trying to reset for eighth grade. He started seeing a therapist, but eighth grade was just a repeat of seventh. Once he moved to ninth grade and high school, it got ten times worse than it was in middle school.
My name is Delilah and I am the mother of a son who was diagnosed with nonverbal learning disorder when he was three years old, and prior to that was diagnosed with low muscle tone.
I had a feeling there was something that wasn't quite right at a year old. We started early intervention for him, which consisted of physical therapy, and then we went into the early intervention program for school to get him ready. That added onto the physical therapy, with speech therapy and occupational therapy. Now he's twenty-one years old and he's doing amazingly well.
When he was diagnosed with Asperger's, we were told that he was going to have trouble around the third grade with math. And sure enough, when third grade hit, that's what happened. He really struggled with math. Simple things like addition and subtraction—he just couldn't follow it.
As time went on in school, there were different things that he struggled keeping up with. For example, he had trouble with transferring information from the blackboard onto the piece of paper, because he had spatial issues. So when he would write stuff down in his notebook, or he would write down math equations, everything was on a slant. His handwriting was always terrible, no matter what we tried. When he slows down, he does better. But he had a lot of challenges in school both socially and academically.
We had intervention and he got an IEP. At first, it was just going to be a 504, but he was diagnosed so we were able to get him the IEP. Because of that, we were able to get certain accommodations in class. So for example, he had to sit upfront, he couldn't sit in the back. He had more accommodations for testing. For him to take a test in a classroom filled with students was very difficult for him given the distractions. So he would take tests separately, and that worked out really well for him.
I'm Vivian. I'm fifty-two. I live with my husband and my daughters in New York State. My daughter Talia was diagnosed at age six and is now seventeen. She has an older sister who is twenty.
When she was born there were no problems with the birth, everything was fine. But having an older child and a younger child gives you the ability to have a little bit of contrast and that was intriguing for me. My oldest daughter was a chatterbox, but Talia didn't talk quite as much. She was always very observant and would sit and stand in one place taking everything in. A lot of people thought she was shy, but I knew she was just doing a lot of observing and absorbing of what was going on around her.
As time went on she did end up talking more, but there were a lot of speech delays. She had articulation problems to the point that you could barely understand her. Often her older sister would talk for her and sometimes translate what she was saying as she often understood more than the rest of us. When she got to school she started speech therapy three times a week, and that really helped. She did really well.
I'm a teacher. My husband's a teacher. While we were working our kids were in day care and we were extremely lucky. We found a day care provider who had a master's degree in early childhood education. She was very aware of developmental milestones, behaviors, and things of the like. She too began to notice different behaviors at the day care when she was interacting with other kids. Talia wasn't really respecting physical boundaries very much. She was being a little intrusive. As a result, the day care provider recommended that we get Talia evaluated so we sent her to the same psychiatric nurse practitioner whom she had sent their son to. At that point Talia was diagnosed with OCD.
The diagnosis made a lot of sense. She had always liked for things to be in a certain place in a certain time when she was little. For instance, in the mornings, I would leave for work and every morning she wanted to be up at a specific time to wave goodbye to me. She had a very set routine, needing to watch the same set of TV shows at the same time everyday.
That wasn't the end of the story though, because that same nurse practitioner we saw referred us to a therapist that we started meeting with. After the first couple of months he sat us down and said, "We need to tweak her diagnosis. It's not exactly OCD. She's got Asperger’s." I was a little shocked at first. I wasn't expecting him to say that.
Hi, my name is Denise. I have one son, Jared, who is now age twenty-two. He was diagnosed with Asperger's at age fifteen and with ADHD at age five. He's also adopted, and we've had some struggles with reactive attachment disorder and anxiety.
Most of my struggles were trying to get Jared originally diagnosed. ADHD, anxiety, and RAD were the original diagnosis, but I knew there was something else going on. Around twelve we moved to a different state and the transition was substantial, so I had to do a little advocating and teaching because they didn't know a lot about ADHD, much less Autism.
As he approached the junior high years, that's when some of the social issues became apparent, and I started reading everything I could get my hands on. He really didn't have friends and had trouble making new friends and getting to know people. He was very friendly, but because of the lack of social skills and because he was different, a lot of times kids shied away from him.
Academically, he was extremely bright. He read two or three grade levels ahead. He was pretty good in math, and so it was difficult for the school to understand him because he was so bright. Some of the quirky behaviors they didn't understand because they'd always tell me well, he's such a smart kid. I was constantly fighting for more training for the educators in the school system to understand that he learned differently, he understood things differently, he accepted things differently. I went to the school a lot. I would communicate with all of his teachers regularly through email and texts. I have gone to different classes and sat in. I would tell them how to deal with some of his behaviors. Basically, I was an assistant teacher. I had to throw my whole life into advocating at the school for him, because there was so little understanding of kids on the spectrum.
Hi. My name is Audrey, and my son's name is Austin. Austin actually wasn't diagnosed until sixth grade. So that would put him at twelve at the time. The beginning of his school career certainly wasn't difficult, but there were times that were not very easy for us. It actually got more difficult after he was diagnosed, although you would think that it would be the other way around.
In first grade we moved to a different state, and he had this teacher that was very, very mean. We had a parent-teacher conference right off the bat and the first thing she said to me was, "Your son is a major distraction in my classroom. You need to do something about it. He's distracting the other students and not learning the things that he needs to learn."
It was an awful year. I think his first grade year was very traumatizing. On top of the move, they could not accommodate him and just made him feel like he was a distraction that didn't belong anywhere in the classroom. He would try to participate in things, but he would get shut out which was very devastating to him. For example, they had a breakfast with Santa but you couldn't sit on Santa's lap unless you brought a gift in. That day he mysteriously could not find the gift that he had brought in, so he couldn't sit on Santa's lap. So it was things like that. I couldn't even be there for him as a parent, because the teacher just did not want to have anything to do with me.
I'm Brielle. I am the mom of Dalton, who is now fifteen years old. He was diagnosed at seven.
Dalton was born when I was forty-one and my husband was forty-five. He remains our one and only, so my husband and I were both older first-time parents. Given that, we were doing everything literally by the book, or so we thought.
I had tried to make different deals with different educators. "Hey, can we go about trying this?" "For math can we bring him into tutoring so that he can keep up. What do you think?" A little bit of this, and a little bit of that, but we never really got anywhere with it. They would say, "Sure, let's talk about it." But then it would never come up again.
So we went to our IEP meeting in the fall, and three different teachers came in and told these long stories about how awful Dalton was. We were completely blindsided. Forty-five minutes later, they came up with the recommendation that he be removed from the program. So anyway, three weeks into the 3rd grade we realized that we had to remove him from this program that he has been in for the last several years, because he simply was no longer welcome. So we removed him without a plan B.
So for three weeks he was at home with a full-time caregiver, while my husband and I were trying to make a living while hurriedly investigating what our different options were. There was a neighborhood school, so went to that elementary school saying, "Hey, our son has Autism and ADHD and needs to come in." But the principal wouldn't even meet with us. So we ended up at another school that was a twenty-five minute commute from our home.
I'm Miriam. I am a special education teacher in Texas. I have two kids. My youngest child is thirteen and has Asperger’s. We found Asperger Experts five years ago when he was first diagnosed.
Parenting him has been a joy. He's like an old soul with so much insight about history and life, especially compared to people his own age. When he was in third grade, his diagnosis was switched from ADHD to Asperger's. Starting with his therapist and then going through a psychiatrist and neurologist, he maintained that diagnosis. Despite the multiple validations of his diagnosis, his school district refused to acknowledge it.
In Texas, you can have the medical diagnosis and not have to be accommodated under the educational diagnosis. He ran circles around the other kids in terms of content and curriculum so while they accommodated him under ADHD, they refused the Autism diagnosis several times. Some of the ways that he exhibited his sensory issues was diving under the desk and covering his eyes and his ears, or lying on the floor, which is something he still does. He's six feet, one inch tall, which for a thirteen-year-old in gen ed, can cause problems.
I actually worked at the school that he was attending as a paraprofessional before I became a teacher. During that time, they switched his placement from general ed to a special ed self-contained classroom. He didn't really get a curriculum there. He had caring teachers that tried for a couple of years, and it was okay. It wasn't ideal, and he wasn't getting the rigor that he needed, but we dealt with it.
In fifth grade things changed drastically. He shut down and wouldn't talk about school. There was no, "What are you learning?" "What's going on?" Nothing. He said, "Mom, I don't want to talk about it." School was stressful enough, so I respected that and didn't want to stress him out more.
I went to pick him up one day for his regular medical check and when I picked him up, the teacher wanted to have a word with me. He was loping around the school, and we found him behind the stage. We were going to be late for his appointment, so I rushed him into the car. We got to the car and he pulled his sleeves back, and I saw he was covered with bruises on his upper arm. He told me that they had dragged him into their “calm-down spot,” which was actually a closet! They literally dragged my child into a closet, because he refused to go in.
My name is Katilyn. I'm the mother of Zander who was fifteen when he was diagnosed with Asperger's.
I think he was diagnosed so late because he is so smart and really was not a behavioral problem. He wasn't causing any issues in the school system, his behavioral records looked fine, his grades looked fine, but they never looked at him socially for communication difficulties or any of that. In fact, before he was diagnosed, he was tested in about second grade, but they basically told me that he was quirky. That's the exact words they used, he's quirky. Very smart, no behavioral issues, a little bit of an odd personality. He's just kind of quirky.
So they pushed him along through the system. But when he got into middle school, I could see he was really struggling, especially with the writing assignments or anything that required you to express or use communication skills. He's very factual, so to write an essay or a paper, there was nothing there. He just gave you the facts.
High school is when I really started to see the anxiety part of it come out. The first time I reached out to the school was when he was a freshman. It was probably the second day of school. I noticed his level of disorganization: he was so confused, he was switching classes constantly, he had multiple notebooks to take care of.
My name is Greta. I'm from Iceland, but I live in Norway and have been living there now for eleven years. My daughter’s name is Einara.
I think I first looked up the word "Autism" online when she was three. When she was born, everything was as it was supposed to be. I was not worried about anything. When she started kindergarten, life got a little harder. She didn't want to join and play with other kids or do the things that she was supposed to. Trying to leave the house would lead to tantrums. She had problems learning to ride a bike.
There were many questions that I couldn't understand. I was always looking for answers. When she had great meltdowns I had a terrible feeling that I couldn't help her. The answers I usually got were, "She is not disciplined enough." "We need to be tougher." "We need to set boundaries." None of that worked, obviously. It was really hard.
I remember that it was a national holiday in Iceland, and we were in this big gym with a lot of kids. Einara didn't want to participate even though she knew some of them. She found these two hula-hoops, went to one of the corners, and made her own game, doing it over and over again. It was this repetition which switched on something in my brain that said "Autism."
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