how do you handle telling family members about PDD-NOS? - Autism Spectrum Message Board

pixie88 · 07-15-2003, 07:13 PM

My daughter was recently diagnosed with PDD-NOS. I understand what this means, but how do I explain this to family members? I don't want it to become an "issue" or for her to be treated any differently, and I'm afraid that would happen once I start telling people. I told my father, who immediately assumed that the doc had no idea what she was talking about. HELP!

Pandabaire3 · 07-16-2003, 06:20 AM

My advice to you would be to stop caring about what others think in regards to your daughter, her diagnosis, and the way you go about taking care of her and following up on her needs. People who have never had a child with this condition do not know nor do they understand all that is involved and in some cases, you could explain until your blue in the face and they still wouldn't understand. Everyone is going to offer their advice and opinions to you for what to do - you just kindly accept their help but then do what you feel is right for your child.

I too was very worried about telling people in the family of my son's HF autism. I also felt that they would be "different" around him and treat him differently than they treat the other kids in the family (like cousins at big family get togethers). I just simply told those people who are more involved with him at first - like grandparents, and let them digest it for a while. I highly suggest you get some books on PDD and share information with your father so that he understands more about your daughters condition. Take him to scheduled appointments with you to meet her teachers or therapists or doctors - for instance, your child's next meeting with the doctor that diagnosed her. Or eventually to IEP meetings for school. Get your parents more involved with the very things that help her with her learning disability. Sometimes people don't really believe whats going on because they haven't been there to talk to the doctors and view your daughter during the tests and so on.

Your child has already been pinpointed by family members as being a little "different" in her own way - trust me on this...people who have watched her and seen her behaviors have probably wondered why she does certain things or acts a certain way, so it's not going to be any major shock to some to hear she's PDD. Give things some time and eventually you will become more comfortable discussing things about her with other members of the family, Also things will trickle down as your parents will eventually discuss her with other family members while not in your ear shot. Expect it. Trust that your expectations of her being treated differently will eventually disappear. You will come to see that your fears are unfounded and everyone will love your little girl regardless of the situation. Good luck to you - your not alone in this - there are LOTS of parents out there in your situation!!

pixie88 · 07-16-2003, 10:07 AM

Thanks for your advice. I guess I'm just being overprotective. I agree with your point of only sharing this with those who are closest to her. I have talked to my mom about it quit a bit, and she has been very supportive, thank God! My father tends to think no one knows what they are talking about unless he is given concrete proof. I don't think I would feel comfortable taking him with us to the doctor though.

rids · 07-16-2003, 07:53 PM

I hope you take this the right way....
Your comfort level is going to need to change many times in the next few years. You are going to have to reach beyond your comfort zone in order to get your daughter the help she needs, and the breaks you will need. This diagnosis is absolutely exhausting, and will stretch you emotionally farther than you ever thought possible. The divorce rate among parents of autistic children is sky-high. Be good to yourself, her father, and take care of your relationship. Remember why you had your child in the first place- especially during the roughest times. Your partner and your family are either going to be your rock or your worst nightmare. You will have to change your perception of many so called professionals - as the most educated people in this field drive mini-vans, carpool kids around, and live on the Internet. (Moms & Dads)
Take whatever interest, assistance, and support anyone offers you-as you cannot do this alone and stay sane. You will soon realize that what most folks whine about being their "huge problems" is pretty petty stuff, and so trivial comparatively.

Joanne · 07-16-2003, 09:50 PM

My son Ryan has PDD-NOS. My family and my husband's family seemed to have a problem with the term PDD-NOS and pervasive developmental delay not otherwise specified. I simply explained to them in a very simple matter... he is autistic. Of course, they all had a fit and told me the doctor's had no idea what they were talking about. They said that Ryan was not the "Rainman". I informed them that autism does not mean the same thing now that it did in the good old days. I told them all to do a little research on line. I also informed them that they were more that willing to read Ryan's medical records. I always get a copy of everything. It has been over a year now, and they still know nothing about his placement on the spectrum. I simply ignore it. I feel I have too much to do in helping my son. I cannot hold their hands trying to educate them and convince them that it is not from bad parenting or uneducated doctors. I let people and family think what they want to think, feel how they want to feel. I know the truth. Ryan, his father, his sister, his brother, and myself are the only ones who have to live with it on a daily basis. My advise to you is to let them deal with it on their own. You have enough on your plate right now. They are either going to be supportive, or they are not. You can't make that choice for them. I wish you a lot of luck. When it comes to family, sometimes it is harder to put things in the right perspective for them.