Saturday, February 28, 2009

Have you talked with your child about autism?

Yesterday at Bearhug's IEP meeting his ASD teacher asked us if we had talked to the boys about their autism.

I'll give you my thoughts on it and how we've approached with Cuddlebug and Bearhug (obviously haven't crossed that bridge yet with Little Bitty), but I'm really curious to hear what other parents think and how you've handled this with your own children. I just want to say up front too, I don't think there's any right or wrong way to handle this, and my guess is it's something that we'll be evolving over time.

We've never had an official "autism" discussion with our boys. We've had some talks with them about how their brains work a little differently than some other people's brains. We've talked about how there are some things that are hard for them (they already knew that) that are easy for other people, but there are some things that are easy for them that are hard for other people. Basically, we've framed it as everyone has their challenges and everyone has their talents, and you need to just do the best you can to work on your challenges and take advantage of your talents. Sometimes you will need a little help from other people, and sometimes you will be able to help other people. It's like that for everyone, just in different ways. We haven't really focused on terminology or put a name to it.

Apparently, there are some in the school district who believe that kids with autism should be taught to advocate for themselves. I agree with that, I guess we just take a different approach. When they are a little older, we will talk more about autism specifically and teach them how to share information about autism with others. We'll certainly be there to answer questions as they have them. But for now, we really just want them to be able to just be kids and not have to be "advocates" at such a young age.

We've tried to give them terminology that is more accessible for the average person. They can explain to someone, "I'm having a hard day" or "I need a break." Most people can relate to that in their own way. From the time they were little, we referred to therapy as "school" and their therapists as "teachers." There's obviously nothing wrong with going to therapy, but we wanted it to be something that seemed familiar, and they'd seen plenty of cartoons about "school." Also, once they got to a point of being able to talk to other kids about their day, we wanted it to be in terms that the other kids could relate to.

It's not like it's a secret, we talk about autism at home and it's not a big deal. We just haven't made a point of having a specific discussion about it. They've had enough challenges with things like stimming and communication difficulties that present obstacles to social interactions, we didn't want to add terminology that would be unfamiliar to most people to the mix.

So, that's what we've done so far. I know some people talk more specificially about autism with their kids sooner, and I think there are some benefits to that too.

If you did, how did it go? What did you tell your child, and how did they respond?

If you're an adult on the spectrum, how did your family handle this? Do you agree or disagree with their approach? Do you have any advice for parents?

If you're a teacher or therapist, how have some of the families you've worked with handled this? What are your thoughts on it?

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kristi on February 28, 2009 at 12:24 PM said...

Not really, I don't know if TC would even understand. I am sure he realizes he is different than other kids. We spend most of our time trying to help him handle his emotions without cursing,.....that is a full time job!

Amazing_Grace on February 28, 2009 at 12:43 PM said...

This is what we did:

We compared MONK to other people in our family and famous people on the spectrum as well. Knowing that others have it made it not such a big deal.

I hope this helps. :)

Anonymous said...

"I don't think there's any right or wrong way to handle this"

I really support parental choice for the method and timing. The school personnel may have just been gathering information to sync with your choices.

"we'll be evolving over time"

I really support a developmental approach - the level of your child's understanding dictating the level of explanation. Appears to be what you have done.

Children don't know what they don't know. I'm all for stating the obvious and using correct terminology - like with the s*x talk.

If it is important to you to be the ONE who tells them, better front-load the discussion. If you feel like you can handle the occasions where son comes home and asks what does ret@rd (any diagnostic slur) mean, then you might wait and watch.

My observation of families I have worked with....many assume the child understands or is hurt when the child takes cues from the parent response.

I have also observed much stress over this kind of issue when I would focus on other issues. Parents get to choose their sources of stress. I reassure as much as I can.

Long term benefits to any method are mostly in the middle - not extremely good or bad.

That's my take. Barbara

lonestar on February 28, 2009 at 9:37 PM said...

@therextras "the school personnel may have just been gathering information to sync with your choices." yes, that's what she was doing, and we appreciated it. It just kind of caught me off guard since it hadn't really come up before. thanks for your comments, some good things to think about.

Maddy on March 1, 2009 at 10:52 AM said...

We've not had a specific talk with the boys although we have had one with their sisters.

Like you say, it's not a secret but I think it's more organic than that, as they are who they are.

I'll be interested to read what other people are doing about this.

Debbie Yost on March 1, 2009 at 11:13 PM said...

As you know, my daughter has Down syndrome, not autism, but it's still an issue we will be dealing with one day. Like you, we've not really had a specific conversation with Peanut, and she wouldn't understand it at this point anyway, but Down syndrome is a common word in this household. In many ways it will be different for Peanut. She has physical characteristics that set her apart from other children. It is something I think about on occasion, but not really dwell on.

Elizabeth Channel on March 2, 2009 at 11:04 AM said...

This is such a timely topic...lots to think about here.

Khadra on March 2, 2009 at 1:08 PM said...

No specific talk yet. Im not sure how we will handle it. We have a whole host of stuff here, Asperger's, delays, ocd, anxiety, adhd, and that isnt all the kids, some of those are within mom and dad too! behaviour at home for all of them has been normal - for our home lol! but we are in K and grade 1 now and I already see with my first grader that we will be needing some sort of talk very soon.

Patty O. on March 2, 2009 at 4:36 PM said...

I think what you are doing is great. It is a tricky, balancing act, I think. My son has SPD and has a lot of ASD characteristics, but has not been diagnosed. we haven't even really talked to him about SPD, but instead focus on his needs (like you, in saying things like I need a break, etc.) we also call therapy "play" or his "exercises."

An acquaintance of mine has made a huge deal of her son's SPD to him (she hasn't gotten him therapy, but has talked to him about it a lot) and he now uses his diagnosis as an excuse for bad behaviour. This has not won them many fans at the school. The teachers are all annoyed with her because her son is getting violent and not obeying the rules and is hiding behind his diagnosis. In my opinion, it is better to talk to kids about their needs and how to cope with certain situations, etc.

Though of course, there definitely comes a time when the discussion needs to go deeper, but in my friend's case, I feel like she has focused so much on the label and not at all on helping him cope with real-life situations.

CC on March 3, 2009 at 12:15 PM said...

Very interesting. One of my student's families is going through the same dilemma. He is 9. The Autism Specialist wants the family to talk about it so that they can have more honest discussions, but the family is hesitant.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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