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My name is Katrina. I am a mom of a fourteen-year-old son named David who is diagnosed with ASD at age nine and we live in the UK.
When he was in nursery 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 advanced 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 of the museum 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 get often upset at things. Likewise in the home environment as well. 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 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.
So he would get to school and be okay at first but as the day went on he would start to struggle. We'd start to hear things about people getting intimidated by him because he has a bit of a temper. He often had a meltdown where he got in people's faces if he didn't get what he wanted in the way that he thought it should happen. (It's not fair that they're allowed to go in the sandpit when he wants to go in the sandpit, things like that).
We didn't really know what to expect, he's also our first child so we had somebody come and help us with his behavior. They gave him strategies about calming down, but on reflection they were absolutely useless because it wasn't being seen from his perspective, it was just about learning to temper and control his behavior.
At this point he was about five or six and the groups of children around him were starting to move away. He was not being invited to parties or to play dates because of his behavior in class. His classmates found him intimidating because he was in their personal space too often. He also rocked and he couldn't keep still and was always sitting in a chair rocking or humming, so his social group was starting to shrink fast.
As this is happening his outbursts were happening more as well. He would often explode or destroy something. That could have been throwing a chair across the classroom or throwing books from the shelves, which would mean that the whole class would have to be taken out. And then they'd have to get somebody else, and then move him out to another classroom and move the other children back into the classroom. This was starting to happen on quite a regular basis and we were getting calls from the school.
So when he was about eight we actually had an assessment done. It was called an inclusion team assessment and was about trying to keep children in the classroom. The person who made the assessment said to us "Has he got a diagnosis?" And we went, "No, no diagnosis." "Has anyone talked to you about having a diagnosis?" We said "No, does he need one? And what for?" And she said, "Well, I think that he's really anxious." No one had said anything like that to us before. We never thought that it was anxiety that he had.
So the assessment team said that they think he should get a diagnosis and developed a program for him to follow at school. He would enter the classroom early in the morning about 10 minutes before other children and would be taken through a pictorial diary of the day so that he knew what to expect. They moved him to the front of the class, because then he wouldn't be distracted. One of the things that he liked to do (and frankly still does do) is interject random facts which aren't about the topic of conversation at the time. So they would give him a random fact time. The teacher would recognize that he would want to interject and she would say "Hold your random facts, write it down, and then we'll have some time to give you that later." It was kind of helping, but it wasn't really helping. It was kind of loose support.
I should say from a family perspective how it was affecting the family. He has a younger brother. At this time it was really very tough on all of us and a lot of our conversations were not about us as a family unit. It was all about David and how the day and gone for David and what would we need to do to help David. So his younger brother saw that as well. As David got bigger the meltdowns got bigger and were more violent and things were trashed. Although he never hurt anybody. He would pick up something and almost look around to see where he could throw it without hurting anyone, and then throw it. He never went and landed a punch on anybody. It was all about getting that explosion of emotion out of him. Somebody might get hurt in the crossfire as books were flying, but it was never something that would be really aggressive or directional to one individual.
So going back to the diagnosis, there was a really amazing local organization that's a charity and I rang them up in tears because I didn't know what to do. They were so fantastic and so supportive and told me what I needed to do to get David's diagnosis done and got me an appointment with a doctor. The pediatrician was in there for 15 minutes and she said to us, "Have you heard of the word Autism?". We had our answer within 15 minutes of being with a professional.
After we got the diagnosis, we fought the school to get one-to-one support. When I say fought, I don't know what it's like in the US, but the funding in the UK is very, very tight and you're only supposed to get support if you have something called an Education, Health, and Care Plan, (EHCP). With that EHCP comes funding, and the funding can then pay for the school to be able to employ somebody to support that child in the classroom. So we argued that he was really good at math and science and remembering things, but his writing was very, very limited. So he had all this stuff in his head, but he couldn't get it on paper. So we argued that our kid had potential and the school weren't doing their job if they didn't support us to be able to support him to be able to be in the classroom. I was constantly getting calls to come and pick him up early.
I remember sitting with his teacher, his special educational needs coordinator, and the headmaster, and the headmaster saying, "Well it costs a lot of money to have somebody supporting." And I responded by saying "What you're doing then is saying to me at nine years of age, my son is not going to reach his potential. It is not possible. And is that what you're telling me? He's very anxious. He needs that support in order to keep going." So we got the EHCP after it was rejected the first time and the school paid for someone to work with him. David used to call him his shadow because he would be in the background wherever he went from around age nine to age eleven. We went from David, on an almost daily basis, running out of class because there was nobody there supporting him, to him actually remaining in class and producing work. Without his shadow being there, he would not be in mainstream school now. Before then we were thinking that we were going to need to sell our house and pay privately for specialty school to be able to support him, because we couldn't see how on earth he would be able to stay in mainstream.
The EHCP continues to be great. He has other things like a pass that allows him to leave the classroom if he gets anxious. The school he's in now has houses, he's in a house similar to Harry Potter and Gryffindor so he's with a lot of the same people. We have a really good connection to the people at his school. So if we know that he's had a really bad weekend where everything's gone wrong, or he's anxious about something that he's got to do we are able to flag that with them and his teachers are able to keep an eye on him.
They are supporting him with his writing, because it's still a challenge to get him to write. Say you have a question that says "Describe the door", he might write "The door is made of wood." and that's it. So rather than expand on that, he would go, "Well, I've answered the question. It's made of wood." He's very rules oriented, so he has support with things like that which will help him flesh out answers.
He has other supports like he's allowed more time to take tests, or he's allowed to do them in a different environment to other children if he would like that. He also has spaces that he knows are safe so if he doesn't want to join everybody in the dining hall during lunchtime, he will go and sit somewhere else. He like the library. He likes books, he likes reading, he likes knowledge. So he enjoys being in there, and it's quiet with his hypersensitivity to audio which makes him anxious. So that's kind of nice, quiet space. The EHCP will follow him throughout his education, however long he stays in education, and it's assessed on a yearly basis, so it's been helpful.
He's also become quite brave. He will do stand up pieces of drama where he'll do a solo or something, or he'll join the cast of the school for performances. So he is slowly building confidence and pushing his comfort zones.
After the diagnosis we've started talking about what it meant as a family. We keep it open, we keep it honest. We didn't want to hide the diagnosis from him. So however hard the conversation is, we talk about it openly.
I got him this book called "Dude, I'm an Aspie", which he loved, of a cartoon character who had several relatable traits. He related to a lot of the traits the main character had such as hypersensitive hearing, everything being planned, disliking changes and not being able to make eye contact. I related to that too, and it was upsetting to read things that I'd been telling him off for years but I was just ignorant of it up until that point.
I used to tell him and emphasize "Look at me in the face or you're going to have a timeout now," "Pay attention, this is not something you can look away from," because my kind of training is to make eye contact with somebody to build trust. So it was really upsetting to know that I had been putting my child through something unnecessarily because I didn't know about it.
The last few years have been better. Partly because he's maturing and getting older, and partly because we are now in a position where we have better understanding. Now we go through his timetable on a daily basis with him. We know when to prompt him if he has a trombone lesson. I know that if his trombone lesson is at 12 o'clock, i'm going to go and prompt him at quarter to 12:00 and say "You know your trombone lessons at 12:00? Have you got it ready? Have you got your music ready?" That way he doesn't get surprised by it.
We are very much aware of how we need to involve him in conversations about what we are doing and how he feels about that. We have to be more mindful of how he feels and what that impact could be on him when things change.
For example, I could ask him to go to the local shop because he's been there before. But if I ask him to do a different local shop, if he's not been in there before with me or with my husband or with his brother, he wouldn't do that. He wouldn't feel confident to do that.
Sometimes he still explodes and can be very short-tempered, but he's getting better. We had a situation last week where he threw everything around the room upstairs, so he still reverts back to those things that he did when he was eight or nine, but the difference is that he doesn't spiral. It is almost within the moment and then he ties it up again. But instead of reprimanding him or telling him off, we recognize that he's anxious and say "It's okay. It's fine. When you can talk to me, we need to talk about this."
I would say to other parents, try not to panic. It's OK to scream. It's OK to cry. It's OK to laugh. If your thing is to reach for a large glass of wine or a beer to help you through that evening, then that's OK as well. Have someone you can talk to, have a buddy that will listen to you and not judge you. If you need a support group, find one. If you're happy to do it on your own, that's OK as well.
You're going to have to grow a thick skin. There will be people who will judge you. It is really hurtful when you watch your child see a classmate hand out birthday invitations, and your child is expecting theirs, and the child whose birthday it is turns around and says "You're not invited because you'll have a meltdown and upset everyone and ruin my birthday."
Be honest and celebrate the difference with your child. When he had his assessment, we talked about all the incredible people that have what he has as their superpower. You think of Einstein or Bill Gates, or people who are incredibly creative and they look at problems differently. Or companies like Microsoft who actually advertise for hiring people on the spectrum because they have a different way of viewing things. I tell him that his brain is wired differently, but that is just so unique. He is really lucky to have this different view of the world that I can't appreciate. It's brilliant.
My son went from being at school where he was so distressed, that he would destroy a classroom, run out of school, and upturn family outings because we didn't do something the right way that he was expecting. But he's now at a place where he is in school, and he's thriving. He's doing stand-up drama pieces on his own. He's gotten a couple of friends.
Find some support, and fight, fight, fight for the support that you are able to get. Don't give up on first go. If you get a rejection for assessment, or diagnosis, or funding, just keep going. We could have given up a long time ago. If we hadn't fought for him to have support in that classroom, we would not have the child that he is today.
Want more? This was an excerpt from our book "Finding Our Place: Successes & Setbacks In The School System". Get the whole book here.
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