When family disagrees about Dx

Post Reply New Topic

Before dx, I called my son "highly sensitive". I still call him that if I need a simple explanation, rather than have to define what Asperger's is. That might work better for your ralatives, while you focus on his specific needs. Asperger's is a confusing dx so it will be a while before they can understand. Each aspie is different so what counts is knowing your son, not trying to apply a label. They need to learn to accept your son for who he is, not accept the label.

For example, if they think he is spoiled, they need to understand that NT discipline techniques are ineffective for your son. They are harmful instead. You know that by experience, not due to the label.

We honestly haven't told many of the relatives about daughter because unless they spend a lot of time with her they wouldn't notice. We just told them she is really shy but is learning to talk more in school. There are some very gossipy relatives and we find stories come back very different from they way we told it. Our kids have also been diagnosed with Cystic Fibrosis and we sort of know how the family reacted to it and we are now reacting accordingly with the Aspergers/HFA Diagnosis.

Let me just caution you about calling the child shy. I did that to try to keep people from going way out of their way to get my toddler to repond to them. So in preschool he refused to speak at all, but was talkative at home. It took some work to get him out of selective mutism.

On the other hand, probably any label could have any problem. I had just written that I call my son highly sensive sometimes. But we did have problems with the shy label.

Another tack to take: acknowledge that your son is, indeed, gifted (I assume he earned that label somehow) and let your family know that you are doing everything you can to honor his gift - and the therapies/interventions seems to be best the way to helping him embrace it. Let them know how common it is for gifted kids to become lost if their needs aren't honored.

After all, label or no - isn't that what we're all doing?

aann Thanks for that reminder. I know I shouldn't be saying "shy" and should be using another word. But to be honest I rarely use the shy word. I think I should be looking for another word to describe autism to casual people who I don't want to get into details with.

Since my guy wasn't diagnosed until he was well into elementary school (end of second grade), I didn't have a diagnosis to use - and I didn't think he needed one! I always said, "That's just my boy!" That's probably as good a response as any. Whatever you come up with, remember that your child hears it too, and make sure that it is a positive (or neutral) statement, and one that will not cause your child to internalize any negative feelings or behaviors.

I would vary it according to the audience. For strangers and aquaintances who are trying to get him to talk, I would say, "Woops, looks like he's not up to it right now. Maybe later," or just, "Maybe later." To reverse the selective mutism, we used to say, "I'm so proud you are no longer a shy boy," without fanfare and only once a day or two. Take note that my son was only 3 at the time, and it worked beautifully.

To family who need something more substantial, I would say that his teachers/doctors/therapists say he is highly sensitive, wired differently, a little professor or gifted etc. Years ago, parents who used such terms were derided and thought to be excusing their child's behavior. I haven't had this response from anyone, though.

For me it was very important that I treated my son as he should be treated in front of family. If it looked like spoiling him, that still was what I had to do. I was showing by example how my son is to be treated. The truth is, a meltdown (for AS kids) is different than a tantrum (for NTs). So the family members will see that difference if they have any intuition at all. So when the finally get it, they will already know how to work with your child.

There is no guarentee a certain way will work. I lost a neighbor as a friend b/c she thought I let me son get away with stuff. She was probably partially correct. I had no idea what I was doing. I'm grateful it was only one friend, and I probably would have lost her anyway. It matters more that you treat your son the best you know.

We don't tell anyone, family included, that we don't think will be supportive, and we just deal with situations as they arise. They mix in anyway, and like to tell us what we are doing wrong, and I either ignore it (and quietly seethe) or say something short to try to address the specific thing they are kvetching about. If they keep going on about it, I either refuse to discuss it further or say something conversation-ending as the situation requires.

If they are being nice and helpful (but meddling) as opposed to mean about it, I would just tell them something like, "I know you don't think _____ is unusual, and that is great! However _________ does need help with a few things and the label helps me get help for things that __________________ needs work on."

If they keep pushing, I would say something like, "I know you have concerns but we really do know best, and you will just have to trust my judgement." If it gets to a point where they question your judgement explicitly and they get nasty, then you'll have to handle it in a more brusque manner, until they get that they need to stay out of it. If they are really tone deaf like my in-laws, I would put a kabosh on the conversation as soon as they start criticizing, and just keep refusing to discuss it.

the best way to handle your family members is to tell them that you are taking your precautions in addressing the problems you see in your child. [u]the most important thing is that you or them[b] dont worry at all about which diagnosis he was given[/u][/b],but rather seek intervention for the deficiencies in your child development ,wheather language,social impairment ...etc.this is the way you can treat your child,ignore the labelling.