Diagnosis Journey

Playgroup and Introduction Letter

We’ve joined a play group on Saturday mornings that my son doesn’t all out object to and that my daughter loves.  We go with a neighbor of ours and her children.  Today was our 2nd visit and it all went well until I forgot my son’s “rules” for transition and things fell apart for him very quickly.  My neighbor and the lady who runs the play group have had a few questions about my son’s quirky behavior, so I’ve written this letter that I’m going to give them.  It gives a pretty good introduction about what to expect from my son.

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Hello! I am *****. I am five years old. My mommy wrote this letter about me for you to read so because she knows how to say things in ways that I can’t just yet and I want to help you understand me better.

I am currently being diagnosed for autism. Autism is a sensory, social and behaviour disorder that affects the way that I perceive and interpret things because my neurology is affected. Misunderstandings with other people are very common and make me very anxious. I’m not a naughty child– I want very much to fit in just like everyone else, but a lot of times, I don’t know how to do all of the right things to make that happen. I get frustrated about that a lot.

Autism affects different children in very different ways. Here is how my autism affects me.

I can be very picky about foods. Even if foods I love are cut in a different way where I don’t recognize them, I may refuse them. Mommy is working very hard with me to teach me to smell food to identify it as something delicious that I like. This approach is new to me, so I often forget it (and to be fair, so does mommy!). I’m not allergic to anything though.

I can also get quickly grossed out by gooey, sticky foods if I have to stick my hands in them. I like dry messy play with salt or dry beans and rice, but get ill if I’m made to put my hands in sticky gooey things. I also love painting, so long as it doesn’t get on my fingers! No mud pies for me please!

I might also be picky about how my socks fit over my feet and how my sleeves fit under my coat. I do prefer long sleeved shirts and long trousers and I am very attached to my hat.

Because I’m particular about how things feel, I also have difficulty with poo’s, so you might see me still wearing nappies. Mommy encourages me every day to wear underpants and to use the toilet, but I might go a long time holding my bowels, so we take a break and I wear nappies so that I can feel freer to move my bowels so that I don’t get ill.

A lot of times when I find something to do that I enjoy, it can be difficult for me to shift to the next activity. I don’t cope well to quick changes, but I’m very good at adjusting if I’m given a warning about five minutes before changing activities and if I’m told what activity we are moving on to. If I still resist, remind me that you warned me 5 minutes ago and let’s do a countdown from 10 to move to the next activity. If I still resist, go ahead and start on the next activity and I’ll join in as soon as I can. I do much better when I know what I can expect.

I do have a speech delay and I am very conscious of it. It is why I might be shy when talking to adults or to kids my age because I know it is not easy to understand me. And it is also why I find it much easier to talk to children younger than me and to people I know, because they do often understand me better. It is also why I probably won’t join in for singing and for circle time.

When talking to me, sometimes it takes me a moment to think about what you just said and then it takes me another moment to find the right words to say back to you. Or sometimes I get distracted and need what you said repeated. Just count to three between each statement or before repeating something. Say my name if I’m not looking at you.

Sometimes I do need to pause and go to a quiet place for a few minutes to regain my confidence. If I duck away into a corner or into a play tent or quiet area, just give me a few minutes to myself. I’ll rejoin everyone when I’m ready. This is about self regulation, which I have learned is very good for me.

So those are some things that make me quirky and often misunderstood, which can be frustrating. However, there are a great many more things that are wonderful about me.

  • I have an infectious smile and a very full bellied laugh that makes everyone laugh.
  • I am very energetic and eager to please. I do love praise. I dance around when I’m excited!
  • I like to draw and paint. I am pretty good at reading too, though I like being read to even more.
  • I love anything and everything Toy Story, especially Woody and Buzz Lightyear. I also like Cars, Lightning McQueen and Mater. If you know about these, please talk to me about them!
  • I also like cars, spaceships, dinosaurs and playing with little world people and things.
  • Once I know how my routines go, I am so good at doing them!
  • I love being a good helper. Sometimes if I’m being difficult and you ask for my help, I want to, to the best of my abilities. Or sometimes if you ask me how to fix the problem, I may know exactly how.
  • Apologies are very important to me. I know that it is a way to help smooth out problems. If I’ve done something wrong, please give me the opportunity to apologize.

Also, if I’ve done something wrong, please make a note about it and tell my mommy. Then later in the week, she and I can have a talk about it and I can try again and do better. This is the best way you can help me do better when I’m around others.

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