When family disagrees about Dx

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Hello all..

I have been posting a lot lately as my son progresses through Kindergarten. How do you all handle when family members (close, i.e. Mom, Dad, bro,sis,grandma to yourself) disagree with a diagnosis.

Most of my family thinks that my son is just extremely gifted and shy and that I pushed the doctor to label him. Even though this is something that has been going on for a long time and his teachers and the speech therapist at the school see it too.

Any advice on how to handle people that disagree or try to shove their opinions down your throat....

Thanks guys, you all have been such a blessing to me. I keep second guessing everything I do because everyone tells me that he is fine. I feel like yes I know my son the best and its hard to explain that to family that seems him irregularly.

Thanks!

Be blunt.

I had the same issues with some of my family members, who have all seen V twice in her life, tops.

Pretty much, I just said:


"Look. I don't care if you don't believe me. What I need from you is support. There is something wrong with my daughter and it's scary and difficult, so if you can't step up and be a loving, supportive friend, then I need to know now so I don't discuss this with you anymore."

There will always be people with whom you just can't talk to about these kinds of things. They're in denial themselves and can't offer you any support. It sucks, but it's better than constantly seeking support and getting nothing positive out of it.

Best thing to do is be the best advocate of your son you can be. My grandmother thought the same way about me that your relatives are thinking about your son. It took my mother years to convince them that a label was needed and the correct thing to do.

Just gotta tough it up and keep telling them no matter how hard they try to convince you otherwise. It'll be good practice for when you get the 1 beligerent Special Education teacher in the school >.>

Part of how you handle your family members' views depends on your relationship with them. If you don't see them often, they really have no way of assessing your child's behavior (not that they would anyway, since they, presumably, are not specialists), so it may be best to minimize your discussion of your child's issues, particularly regarding the technicalities of diagnoses. Sometimes, it works best to sidestep the diagnosis, and just talk about your child as you would if he were typical - mention funny things that happen at school or at home (yours will be way funnier than theirs!), talk about things that concern you, if it is in keeping with your relationship - but keep the diagnosis out of it. Just talk about the "thing" that happened, or the struggle that's going on - not the "label." Your family are unlikely to be the primary support about your child's ASD (assuming it's ASD), so you'll get that elsewhere. Try not to expend so much energy explaining your son's diagnosis to your family - they aren't ready to hear it. When they start seeing behavior they don't understand, maybe they'll be ready. When they stop hearing as much from you, maybe they'll stop trying to shove their opinions down your throat so much ...

I found out that my condition was Asperger's several years ago. I can talk with my sister about it okay, and she has researched it and does agree, based on that and her knowledge of me that I am Aspy. However, I can't really talk to my father about it, except in passing. This, in spite of the fact that he took me to many different psych docs and therapists as a child. My parents also had to deal with my situation through most of my life. I am in my 50s now, and my father is in his 80s. My mother passed away 8 1/2 years ago. The Autism and Asperger spectrum were not recognized for what they were back when I was a kid. I was diagnosed with emotional and behavior problems. That's how they labeled us back then, but there are other aspects of these conditions that have nothing to do with behavior or emotions, including hyper sensitivities of one or more of our 5 senses. If my father doesn't want to deal with it that's okay. I am the one who has to live with my condition. It is enough to know that the accusations that I was just a sometimes out of control emotional problem child are false.

As for your relatives, I would not keep shoving it in their faces. They are not ready to handle the fact that a blood relative is not "perfect", because people unconsciously feel that other people will see them as "imperfect" too, if it is made public about the relative with the condition. They will eventually realize that your kid is different. Once that happens, just remind them that nobody is perfect, and get on with your life. Once they eventually want to know why your kid is different, then you can discuss it with them, and then tell them that people on the spectrum are all:

A Different Drummer

If a man does not keep pace with his companions,
Perhaps it is because he hears a different drummer.
Let him step to the music which he hears,
However measured or far away.

--Henry David Thoreau

So, if you take their advice and in ten years your son is having significant problems, are they going to come over and help undo those 10 years that were wasted and/or lead to damage? Are they going to take responsibility for that? If not, then they can STFU. Maybe tell them that.

My parents basically had the "ah, things will work out; they usually do" and ignored all difficulties. Well, I ended up on SSDI at 30, so so much for that approach. (Of course, they had no idea what they were dealing with at the time.)

thanks for all the responses,

I guess I just have to get used to the fact that I am the main advocate for my little dude. I just feel like I am always second guessing everything. Sometimes I look at can see it all so OBVIOUS and they just sit back and say it will work out.

I will do what I need to for my little guy. He is my world.

<3

Early intervention is better. Never doubt that you are doing the right thing - an an engaged, involved and loving mother you are the best person (Dad too) to advocate for your child - you know him.

My family, and daughter's father, resisted a 'label' quite hard. I had my daughter evaluated by the IU - she has been in therapy - without a dx for almost 7 years. She was getting therapy all while my husband and his family tried to cope with the idea that my daughter 'wasn't normal'. When she did finally receive her dx this past January I was relieved - and unsurprised. Her father was somewhat devestated despite years of intervention and my prodding, suggesting and trying to bring him around. That early intervention, I feel, made a world of difference, especially when comparing my daughter to other kids with AS who are just getting their dx and starting their interventions at her age. She's 9 and on first meeting, its difficult to see her dx. In fact, because of that I need to fight harder to get her the services she still needs because her difficulties can only be recognized by careful observation by people who KNOW autism.

If it makes the family more comfortable, drop the label. You only need it in order to get access to educational (and medical) services. As long as your son is getting the interventions he needs, the label doesn't matter in general conversation. If you talk about specifics, eventually, they'll realize he's not going to 'grow out of it'. Gather the support you need wherever you can find it - a good friend, a parents support group, support groups online. There are many options.

good luck mom!

I hate to say it but I agree with the above about dropping the label. You could mention specific symptoms (delays, etc) but some people just won't accept a label as they see a certain stigma or negativity surrounding words like "autism" and "aspergers."

I know what a pain it is when they just don't want to hear it!

I couldn't let my son be alone with my parents because they kept saying he just needed a spanking and that I'd spoiled him. It was at the point where i had to drop all discussion of it and just not leave him alone with them since they didn't want to hear anything about what special provisions he needed etc.

But after time, when I'd stopped trying to enlighten them about the whole thing, they started hearing things from other people they knew and noticed the similarities. You can imagine my surprise when, one day my mom called me up to tell me about an article she read in her local paper about an autistic boy and how much he was like my son and how she told her friend, "My daughter is doing these same therapies with my grandson and it's been working well."

So sometimes backing off is the key. But not on what you know you need to do for your son, keep doing what your heart tells you and eventually others who are not ready to hear it will come around.

All great advice. You are raising your aspling, not your family. It's taken a while for me to feel comfortable leaving my aspling with her elder sibs even. I had to make very sure they knew her issues and how to deal with the issues without making the kid out to be a brat. She can be bratty but not always, and mostly not if her sensory and communication needs are respected.

So....in my opinion....my home is not a democracy and the rest of my family doesn't have a vote.

It took my family time, as well. Mostly I just didn't talk about it unless something was happening in front of them. There is so much on TV and in the public conversation that they should be able to eventually connect the dots on their own.

A common roadblock is that Aspies tend to be born into families full of Aspie traits, even if no one would be full on, so many of the traits DO seem "normal" to our family members, and accepting that they never were, even when Uncle John had trait X, can be a pretty challenging leap. So you have to be patient.

Trust in the work you've done. They just don't have as full a picture as you do.

I should mention that my eldest daughter has her Masters' in social work, is licensed, and works as a case manager for at risk kids and their families. She still doesn't have a vote, although she is Plan B in case I can't care for KB for any reason.

My son dx also, I have decided not to tell any of my family members, I talk about his difficulties but haven't mentioned the label.

I feel at times I should because my siblings have children that I feel are definitely on the spectrum maybe they know and have chosen not to say also.