Starting over: summarizing my philosophy on raising a son with autism

So, after much turmoil, I have finally been granted a new case manager to manage my son’s iep and adaptations at school!  I could have done without the guilt trip they gave me before granting my request, as I feel bad enough probably hurting someone’s feelings; but, it was not a good fit for us and I need to do what is best for my son.  One short phone call with the new lead, confirmed that it was the right thing to do.  I was really impressed with her communication, knowledge of autism and related terminology, initiative to investigate trends in behavior in order to identify causes and pushing to re-evaluate now rather than wait for the official time because of the struggles she is seeing.  Big change from the we need to wait and see how he adjusts that I was getting before.

I have asked for a meeting with the new team to get to know each other and talk about the philosophies we have and what the new people will be working with him on so we all start out on the same page and have all the information about what is going on.  My task, therefore, is to summarize my philosophy on working with my aspie son in a few succinct phrases.  So here goes:

1)  “He would if he could” – He is not choosing not to do something because it is a non preferred task, but rather is frustrate and unable to do the task due to some lacking skill and we need to work with him to develop this skill and get through the frustration.  (This is a basic assumption of functional behavioral analysis)

2)  “Behavior is communication” – If he is not using his words, it is because his words are failing him at that time.  We need to listen to his behavior and get him what he needs.  Do not push him to use his words as this just escalates the situation more.

3)  “Stimming is a coping mechanism and shouldn’t be discouraged” – If you are interested in getting him to stop stimming, you need to look at what is going on that is requiring him to cope using stimming and eliminate the cause.  Just letting him stim is ok too; he is dealing with the situation in the way he knows how.

4)  “He is different, not less and ok just the way he is” – He is in big need of self esteem boosting.  We will work with him to learn new skills to cope, but in no way imply that being autistic is wrong.

5)  “He does not need to sit still and look at you to be listening” – In fact he is probably listening to you better when he is pacing and averting his gaze because he can focus on what you are saying rather than his body’s need to move or the visual stimulation he would be getting by looking at you.

6)  “Presume competence” – He is capable of much more than he is able to communicate to us.  I have a hard time explaining this one since he is verbal and can tell us a lot, but I do think it is an important concept in autism awareness and advocacy.

I am sure there are other important ideas I am leaving out; feel free to share more ideas in the comments.

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1 Response to Starting over: summarizing my philosophy on raising a son with autism

  1. Shelly Damm says:

    It sounds like you and A have been on an interesting journey. And it seems like you have learned a lot on the subject since I last saw you. At that time, I did not notice signs of Asperger’s or Autism. You are an awesome mother, I think. I am glad he has you to advocate for him. Some of the world’s most amazing people have Asperger’s. Support him in his journey now and watch and see how he blossoms with it.

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