Inexperienced "therapist"

[Sweetum]

As we wait for things to officially pan out in terms of therapies for DS, we hired a student from a local university's occupational therapy program to do some OT type of stuff at home and play with him, instead of him just playing with us, his parents and having to follow us all the time. Clearly she is inexperienced as a therapist and we try to keep our expectations not high. However she frequetly talks about her other job which is working at a summer camp/respite care center. She talks about other autistic children and how hey remind her of DS, and how what they do and say is very similar. Firstly, I don't like the word autistic. I intend to fix that, hopefully, by giving her a bookmark I received from a conf I attended recently which talks about "person first" - a child with autism and not an autistic child. Secondly, I am not sure why she thinks that would be interesting or comforting to a parent. Yes, my child has autism, but it doesn't comfort me and I don't expect that it does to another parent to know that their child is a typical case. I mean, it is not useful information and it continuously drives home the point that my child has autism when that is not required at all. I was reluctant to share the diagnosis in the first place but now I completely regret I did. I felt that it would encourage her to know more about what to expect and learn how to handle. And it seems to completely escape her that each child with autism is different from another and that comparisons really serve no good. Anyways, I am thinking this should go to the bitching forum, but I really want to put an end to this and need suggestions. On the other hand, DH frequently tells me that I am way too sensitive and am wondering if it is just that part of my personality that is causing me distress. Need I lighten up and relax a bit? What would each of your do? One moment I feel I don't want her to work with DS anymore (she really is inexperienced but she company that DS likes), and the next,I feel I should get thick skinned - there will likely be many more such and likely skilled ones who might be not so sensitive when they say such things. Anyhow, if your suggestion were to put a stop to it, how do you think I should say it? Thanks for your thoughts.

[truly scrumptious]

First of all, I have never been in your shoes, so please feel free to disregard my comments if you think they don't make sense.

I don't think you need to become more thick-skinned. (Yes, you may come across upsetting things later in life, but that doesn't mean you have to take it quietly now.) As a therapist, her "job" is as much to you, the parents, as it is to your DC. Having said that, like you said, she's probably inexperienced and has no idea the effect her comments are having. It also sounds from what you say, like she has the best intentions.

I might put it in the form of a feedback session and touch upon the following:
- How much your DS loves spending time with her, how happy he is, etc.
- How grateful you are that he has someone to play with, etc.
- How you just want to share your particular sensitivity regarding his autism diagnosis. While you are grateful for her knowledge, and would of course want to know if she ever noticed something that concerned her, you are not very comfortable with comparisons of your DS to other children with autism. You are trying as far as possible to focus on him as an individual, and of course value her advice, but request that she frame it simply as advice "Have you tried doing X?" "He seems to really enjoy Y." without bringing up other children.

Focus on it as your own sensitivity and thank her for her understanding - she should get the hint. She might think she's reassuring you by comparing him to other children, so just telling her that you don't find it helpful should stop it.

If she's smart, she knows this job is a learning opportunity, and will take your feedback and adjust her style accordingly. Again, I don't think it matters whether you're more sensitive than others. As your DC's therapist she should respect that.

[TwinFoxes]

I would just tell her to stop. "Peggy Sue, I find it better to concentrate on DS the person, not on his diagnosis. It makes me uncomfortable to have him compared to other children just because they happen to have autism. It's just not a technique I find helpful, so I'd appreciate it if you wouldn't do it anymore." But in your words.

I thought you were going to say it bugged you because you assume she's telling other parents about your DS. I think that would bother me a little.

What you describe is how I felt when my friends first began med school, and they'd diagnose everyone. "That's very typical of someone with x" they'd say about some random person on TV. I think it's excitement at learning new things. She just needs to be steered in the right direction. I doubt it will be a big deal to tell her. She's your employee after all, and you are not asking for anything weird.

[crl]

I don't mean to down-play your feelings at all, but wanted to offer you a different perspective.

Some people prefer autistic (often adults with the diagnosis) and some people prefer person with autism (often parents of children with the diagnosis). http://communities.washingtontimes.com/neighborhood/autism-unexpected/2010/aug/2/autistic-or-person-autism/. You can certainly make your preferences known, but she may find it difficult to keep track of everyone's preferences and switch her language accordingly.

As far as comparing your child to others, I think she may be trying to reassure you that she has experience with the behaviors you see in your ds. Or she may be trying to say that she thinks you have the right diagnosis, as this is often a concern for parents of recently diagnosed children. It sounds like this is not how it is coming across, but I wanted to offer the thought that she may be trying to be helpful to you.

I will say that therapists who rubbed me the wrong way have often ended up being awesome with my ds and so I have learned to let go a bit of things that bother me if they don't affect ds.

Catherine

[Gena]

Your child's diagnosis is still relatively new and it sounds like you are still adjusting to everything it means. That's OK, it's a process, it takes time.

If you are uncomfortable with what the therapy student is saying or doing, have an honest talk with her. Explain your feeling about these issues. Has her if they have covered topic this in her classes at all. If she wants to pursue this field, so is going to learn how to talk with the parents of her clients.

As Catherine said, a lot of people in the autism community prefer the term autistic. There are people who feel strongly on both sides of the issues. A lot of it has to do with how you choose to think about autism.

Personally, I don't buy into the "person-first" language thing. I think it sounds awkward, contrived, and actually puts a more negative emphasis on autism. My son is an autistic child. He is also a blond child, a smart child, a sweet child, and a Catholic child. None of those things define who he is, but they all play a role in his identity and in who he is as a complex, individual person.

I did, and still do, find it helpful to hear about other autistic children, and how they were (are) similar to DS. It helped me to know that we were on the right track with the things we were doing. And it gave me comfort to know that there are other people like him in the world, which means there is a community he can belong to and fit in. A few days ago, DH and I delighted in reading a blog article about a child who is very similar to our son. It's good to know that there are more like DS out there.

None of this means that you are wrong to feel the way you feel. You might find over time, that your feelings about these issues (and others) may change. But how you feel right now is valid and needs to be addressed. Take the time to talk to the student and help her see your perspective.

Good luck. Hugs. :hug:

[brittone2]

Your child's diagnosis is still relatively new and it sounds like you are still adjusting to everything it means. That's OK, it's a process, it takes time.

If you are uncomfortable with what the therapy student is saying or doing, have an honest talk with her. Explain your feeling about these issues. Has her if they have covered topic this in her classes at all. If she wants to pursue this field, so is going to learn how to talk with the parents of her clients.

As Catherine said, a lot of people in the autism community prefer the term autistic. There are people who feel strongly on both sides of the issues. A lot of it has to do with how you choose to think about autism.

Personally, I don't buy into the "person-first" language thing. I think it sounds awkward, contrived, and actually puts a more negative emphasis on autism. My son is an autistic child. He is also a blond child, a smart child, a sweet child, and a Catholic child. None of those things define who he is, but they all play a role in his identity and in who he is as a complex, individual person.

I did, and still do, find it helpful to hear about other autistic children, and how they were (are) similar to DS. It helped me to know that we were on the right track with the things we were doing. And it gave me comfort to know that there are other people like him in the world, which means there is a community he can belong to and fit in. A few days ago, DH and I delighted in reading a blog article about a child who is very similar to our son. It's good to know that there are more like DS out there.

None of this means that you are wrong to feel the way you feel. You might find over time, that your feelings about these issues (and others) may change. But how you feel right now is valid and needs to be addressed. Take the time to talk to the student and help her see your perspective.

Good luck. Hugs. :hug:

When I was in school, person first was harped on heavily when we began the professional phase. I can see why there are arguments on either side with respect to autism, but if she's entered the professional phase of her program, I'm surprised she isn't more aware of that, or at least the need to be somewhat sensitive.

The person first thing really came into light because years ago there were therapists would literally say "there's a shoulder in room 2 for an eval." Umm...hopefully someone owns that shoulder ;) It just wasn't very sensitive. For that reason and others, patient-first language became expected, and was emphasized heavily in professional training.

Has she interned at all yet, or is she still in the very early phase of her program?

It is okay to be honest with her about what she's saying bothering you. She will have to learn how to work with families and be sensitive to their needs. You have a right to feel the way you are feeling.

I say this as a PT who worked in EI. I was once a young and inexperienced student, an intern, and then a new therapist, but I can't imagine I would have made comments like the above to the parent. Perhaps she's just immature and not seasoned, and is making connections in what she sees, but she's not expressing it in the most sensitive way. Kind of like she's brain dumping on you the connections she's seeing, kwim? Or trying to make connections, because she's new to this, and trying to understand more. I'd let her know how you feel, and I think that's totally a legit thing for you to do. If you are otherwise satisfied with her, I would keep her and give her a chance to remedy the situation.

[Sweetum]

Thank you all for your perspectives. I have been thinking this over the entire week. I do think I want to tell her that it is not something that is helping me, and I want to do it not to make myself comfortable but I feel that I want to add to her learning and experience, and in the process make myself comfortable - your perspectives have helped me see it more objectively. like I said, she is still learning and I don't want to let it fester and distance myself from her. DS really does enjoy her company and I want to treat her like I would treat any of his friends. While not experienced, she does try, and I am soooo happy to tell you all that DS rode his trike all the way to the nearest park (2blocks) and back, and he learnt how to trike all from her! I am so proud of DS and her!

Gena, I agree that it may be because we are still early in the diagnosis. And Catherine, I had no idea some adults prefered Autistic vs person with Autism. Thank you for letting me know.

Sorry, I know I sound all over the place, but I am trying to reach a reasonable compromise Between how I feel and how to be a grown-up in handling this.

[crl]

Hooray for your ds learning to ride his trike! :D

Catherine