Monday, July 19, 2010

10 ways to help your child with autism

Well, 3 AM has come and gone. I just realized that I didn't take my PM meds (which includes melatonin)... and therefore I'm a solid hour away from any kind of decent sleep. I'm also ridiculously itchy (no, seriously, you have NO idea) because I was so attracted to the little colored sprinkle-covered cupcakes at work that I just had to have 2 of them. In the meantime, I thought I'd write some. This is probably a good time to mention that I left my glasses on my beside table and therefore may or may not catch typos, of which I am the queen. Sorry in advance.

These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun "he" for the sake of simplicity and statistics.

10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, siblibg, pastor, friend; if you're still stuck, heck, I'll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you're upset with us.

9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it's overshadowed by the nagging though that Leigh or Mom or Sister doesn't really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you're hearing is the most fascinating thing you've heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.

8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First thing's first; I picked up my kitty. Then I said, "Mom. I'm upset." No response. "Mom, did you hear me? I'm upset." The words felt unsettling. "Mom, I'm telling you something. I'M UPSET!" It struck both my mother and I that this was the first time in... ever, maybe?.... that I'd come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don't let this be the case for your child. Ask your child frequently, "How do you feel?" You may need to offer suggestions or options at first, but never stop asking.

7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Overexaggerate and explain, step-by-step, what you're doing and why you're doing. "Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I'm angry." "Hey, let's get your new school shoes when we go to the mall to get so-and-so's birthday present. People say that we'll 'kill two birds with one stone.' That's a silly way of saying we'll get two things done with one action." "Oops; I expected the ice cream shop to be open. It's probably closed early because it's a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?"

6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say "You can wear jeans or sweatpants today. Which would you like?" Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, "Would you like a game or some Legos? It's your choice." Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.

5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he's 18 years old, who's he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16-year-old, follow stories like a 6-year-old, read like a 10-year-old, and express emotions like a pre-schooler. Don't look at your child as the age he is but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.

4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers... all of the above.

3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I've grown older, I've learned to take fragments of things I've either said in the past or have heard others say and piece them together so that it sounds like intelligble speech. It's really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I've just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.

2. Don't be scared of different. If I want to use a TTS in public and I'm not afraid of "what people will think," you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you've explained that "people typically do not wear clothing like that. They may look at you and think you are strange" and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it's the only way he can possibly stand to be in that crowded room right then, and you're afraid people will think he's rude, then I question why you're trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it's Spider Solitaire on the computer), but it looks like he isn't listening, I ask you: Would you rather have him hear you, or look like he hears you?

1. Be consistent. If you're upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It's okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but "forward thinking" isn't usually one of them... we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can't see beyond the right now to the what will be. We like routine because it's consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something diferent is going to happen, please let us know what to expect and remind us several times. Check for understanding.

I don't hve an intelligent way to end this, because an hour and a half later, my melatonin is kicking in... big time.

Takin' my kitty and goin' to bed.


  1. I know these things, but sometimes I need reminding. Like today, when Bear decided that sleep just wasn't necessary last night, even with melatonin, and bouncing was just so much more and by the way mummy it's day time now - look the sun is shining! (At 4am.) So how can it be night time?

    I remembered not to shout, I remembered to say it was sleep time not night time, I even remembered to model the desired behaviour by laying on her bed with her but there is only so much being kicked in the head, pushed and shoved a mummy can take so at 5am I gave in and put the video on and went to my bed. Completely going against everything I'd been saying for the last oh 8 hours or so.

    So Lydia, your best guess as to what's going on here would be great. I'm all out of ideas.

  2. Lydia, I LOVE this post! It is a great reminder for us. We do try to do the things you have written about but, every now and then we have what I call a "mommy moment" and totally don't react the way we need to for our extraordinary family.

    Thanks so much!!

  3. Some really good ones, an well written. Good job Lydia... I agree on most of them. Especially the second form of communication one.

  4. Mrs. E, Mom says that it's really hard for parents to remember to do them all, all the time, because it's not exactly natural to most people. For us, it's just the way we work, but for you guys it's a totally different way of thinking. But you know, when you have "mommy moments" we do forgive you. We don't expect perfection!

  5. LOL LOL yes, Lydia, your Mom is right. And you are right as well - you all are very forgiving and I am very thankful for that.

    Have a wonderful evening!


  6. Hi Lydia
    I learned a lot from your blog, and your 10 things helped me to notice things and actions that I should have noticed sooner. I can't say thank you enough times,you would get bored reading them.I am Mr. Elgin dad to Chloe. who also opens my eyes sometime.

  7. Thanks Lydia. Such a helpful post. The way you described how your speech is a complex form of delayed echolalia so perfectly describes how my son speaks.
    People always comment how fantastically verbal he is but they don't understand that most isn't self generated speech. At this age he understands a lot less than he can express and another form of communication is a great idea. He also loses his ability to speak when anxious.
    Did being able to read - as in being able to find out information to cognitively understand things help you? My son is so anxious but is not able to ask questions. I don't know if this is because he finds being asked questions so difficult or it just doesn't occur to him.
    Anyway, rambling again.
    Thanks for a great post