Saturday, October 13, 2007

Never Call a Parent "Non-Compliant"!

In some ways, I would have to say that being a compliant parent of a child with ASD is not a recipe for success. Although this button may be a little over the top, it is not altogether wrong either. The best answers are not usually offered to parents right away. I don't even think that I can give parents my best possible recommendations unless I am questioned and my ideas are questioned and modified by parents to fit better the real and pretty much unique circumstances of each child's life and families life. And then, if my best recommendations are not right for a child or family, I sure don't want the family to be compliant. I want a family that is actively thinking and choosing options as these options feel useful and appropriate.

So I was very saddened recently when a primary caregiver of a child I see was accused of being non-compliant (and not in a good way). She was upset, demoralized, embarrassed and in that state we often get into when other's criticize us, where she did not know anymore if anything she was doing was right for her child. This is the negative power of the word non-compliant and so I believe that this word just should not be used. There are other ways to describe the fact that someone has chosen not to do what we say. I extend that belief to children, as well. But that is another discussion.

I know that this is a medical term and is used by doctors, but I don't like the word when it is used by doctors either. I may choose not to take a medicine. That does not make me non-compliant, just un-medicated. In whatever context, the word non-compliant sounds judgemental. That is bad enough because families, feeling vulnerable already, can easily be hurt and demoralized by anything that smacks of judgemental. Worse though, is that the word non-compliant is often used in a way that confuses the issue of who is the decision maker for a child. Parents are the final word in what does or does not happen with their child--not interventionists or professionals. Only in cases of extreme neglect or abuse is this relationship altered. So the word seems hostile and threatening--implying that the professional has the child's well-being at heart while the non-compliant party is being bad (lazy, ignorant, selfish). Even if the word was not so emotionally loaded, saying that a person is non-compliant is too easy an out, because it relieves the professional of the responsibility for making a good case for a recommendation or building professional trust before asking for that trust.

Now, that said, have I ever been frustrated because a family would not do what I suggested? Of course I have. Has my ego ever been bruised when my expertise was questioned? Yep. Have I ever ended a professional relationship because it became clear that my approach to autism was not consistent with the families approach. Yes, and never without some feelings of regret. But that is just how it is sometimes--I was unable to provide a service to the family even though I wished to do so. And sometimes this has not just bruised my ego, it has broken my heart. Like many professionals in this field, I feel passionately about my clients and what I do. I understand that sometimes professionals want to use language that protects both ego and heart. But we get paid to do our work and we choose to do our work and we are in the lives of children and families for just a short time. Parents don't choose their job of parenting a child with ASD nor do they get paid to do it and, God Bless Them! they are in for a lifetime--so their egos and hearts get priority over mine. I believe we need to choose language that protects, supports, comforts, and strengthens parents and find other ways to deal with our own disappointments.

Here is another word that has recently come to my attention and I believe it also needs to be banned from use with parents: terminated. A parent complained to me recently that she was told that if she did not follow certain agency rules, the family would be terminated from services. This family was given many examples of how this could occur as in, One mother was terminated for this infraction and another was terminated for that infraction. What is up with using mob boss language to insure family compliance? I think that parents need to call us on the use of language that feels disrespectful or scary or even confusing and then we, as professionals should find language that is more appropriate.

Here is a little more unsolicited advice to families. Trust your gut reaction to professionals and professional advice. Believe me on this--we are wrong sometimes. Sometimes we are right but our timing is wrong. And there is also NO ONE RIGHT WAY TO DO ANYTHING! Children with ASD are strong evidence for that universal truth. The parents who live most successfully, are most effective, who create lives of joy for themselves and their child with ASD are families who have the courage to do what their own mind, heart, and stomach tell them is right. So don't be afraid to use your judgement in relation to your child and don't trust anyone who wants you to stop using your judgement--which is pretty much what someone is telling you if they say you are not being compliant. If a professional will not listen and understand your need to raise your child as you know to be best, terminate um.

If you have a least favorite word that is commonly used in the world of Autism Spectrum Disorders, feel free to rant a bit in the comments section.

Here are some links to others who rant on this subject

Non-Compliant Patients

Non-Compliant TShirts

R-E-S-P-E-C-T Even more difficult to Teach than to Define


Niksmom said...

I recently found your blog through One March Day (love her!). I am so grateful I did; I have actually passed your site along to our SLP. She told me she likes it a lot, too.

This post is especially relevant for not only parents of children on the spectrum but ANY parent of a child with a disability. I work with a local group of parents that guest lectures in college classes and at professional trainings for service providers; we speak about the importance of the family voice/experience. The points you raise are very important and I will make sure we share these, too. Sometimes we forget to ask for and expect the respect of those who serve our children and families. Thanks for the reminder and the tacit permission. :-)

koo' said...

ugh! even the treat of being termed "compliant" would make me want to be on the "non-compliant" camp. it says a lot about the assumptions of these so-called experts.