Who's business is it??

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Background: My son who is just turned 4 is possibly on the spectrum according to tests etc. The adventure to help him has taught me a lot about myself and my own sensory needs and different wired-ness. It is likely that I would be on the spectrum as well. We are both very high functioning. However, I haven't decided to pursue a label for either of us. I'm happy with who I am and am able to get him educational services for now without... That internal struggle is another post all together- especially with the differing views with our family etc. I have proceeded far enough with medical intervention to know that he is in ever possible therapy he would benefit from and will do what ever it takes to ensure that- I am simply waiting on a label as I am not sure if that will ultimately hinder him down the road.

I did pursue counseling. I love kids- I've always been scared of them because I take the responsibility of raising a functional and helpful human so seriously but I deeply envy their ability to see the world differently. I found my own maternal bond to be surprisingly strong. I was pregnant with our third when our first was 2 and began exhibiting clear signs of speech delay. I began phone counseling earlier this year for many reasons- one of which is to have a better idea on how to handle the struggle of our son having delays and how to move forward.

Current problem I need advice on: My most recent assignment has been to formulate scenarios and how to deal with them in relation to my son. Do you share your child's struggles with everyone? How did you make the decision to be outward or internalized to your family? When dealing with teachers, babysitters or caregivers, how much info do you disclose? What about distant family members? Closer ones? Friends? Acquaintances? I've sorta opened myself up to some of that because I make weighted blankets now to help the other kids in the area...

I tend to share on a need to know basis. For example, I don't tell every person we meet at the grocery store or the playground, "Hey, my son is on the spectrum" If I meet someone and I think we will be spending time with them, I will eventually tell them that my son has mild autism. The reason I do this is because eventually, they will notice that my son has some difficulties or strange behaviors, and I would just rather be up front instead of them thinking "I wonder if she knows something is going on with her son?"

Sometimes it depends on how much time I have---if I don't have time to get into a discussion on it, then I just don't say anything. As far as family members, most of my family has been real understanding and patient. There are a few however, who just don't really get what is going on with my son, so I just let them think what they want to think.

My son has been in the special needs program in the public school system since he was 3 yrs old. I felt it was the best and most affordable way for us to get services for him. I didn't really want to put a label on him, but he has improved so much from the services he has received that I don't regret it at all.

Bottom line is, you do not have to tell anyone unless you feel it will be beneficial to you and your son.

My understanding is that there is a difference between a medical label and an educational one. I will certainly pursue an educational label if needed. I'm just skeptical about a diagnosis that might last him a lifetime as our medical records are really well kept. I'm also on this trip about neurodiversity right now. I can't change the way people view autism but every time I encounter a situation where I'm asked about it, I get defensive. I don't want to cure my kid- he's fabulous as he is. He just needs help adapting to a world that's a little different to him.

I really like your "need to know basis" for things. I think part of my whole struggle with this is that I don't think he should be viewed differently- but that's exactly what happens. I did write a 2 page letter for each of his teachers explaining his traits and habits etc. I feel like our family is supportive in that they want us to all "be okay" and viewing the idea that he'd have ASD would make him somehow not okay... again, to my disagreement. It is an argument I can't win, I've tried. They are set. I feel like it's relevant that he struggles- I need to have something to say when the insinuation is that "he's just a kid" and in fact I know his struggles to be atypical- he deserves more understanding than that. He's triumphs are different too... He's not mean or disobedient. Sometimes he just doesn't get it and needs more encouragement.

Also, with our house being so divided, I wonder if that changes who's business it is? I know not every moment can be a teaching moment for some acceptance movement- maybe that's just part of my own coping strategies. I'm also thinking, if I don't want certain things said, what DO I want for support? And what does one do when an acquaintance asks if your child has a disability? I'm not personally offended- but I'm not sure how to respond because it seems too personal?

I know it is difficult, but whether your child has a label or not, people will view him as different. I know many people do not truly understand autism, and so they think that because our children look normal and are interacting on some level, that they cannot be autistic. I took my son to a developmental pediatrician because he was delayed in reaching all of his physical milestones. He didn't walk until he was almost 2. I had a friend that was an occupational therapist that encouraged me to take him for an evaluation. I was VERY concerned that something was wrong, but autism just didn't seem to totally fit him at the time. It took a long time for it to sink in.

But honestly, the medical diagnosis has not been that helpful in getting help for my son. The school's help as been the most beneficial to us. I decided to go ahead and get him the help that he needed. I was told (not sure if it is true) that his diagnosis would be confidential, and if he is eventually mainstreamed, there would be no reason for it to be made public knowledge. Honestly, the school does not diagnose. They perform tests to see where the child is having difficulties, and they can only suggest that he may be on the spectrum and to put services in place to help him.

Every case of autism is different. My son is improving, but it is still pretty clear at 5 yrs of age, that he is not like most typical children. Sometimes we are able to blend into a crowd, but many times it is pretty obvious that something is different. I have had complete strangers ask me if he was autistic, and it did bother me, but who cares, I will probably never see that person again. Now I just say to people if I need to, that "yes, my son has a mild form of autism"

It sounds like it will just take more time for you to become more comfortable with ASD in general, and then you will probably be more confident in knowing how to handle it.

Right after the diagnosis I didn't know how to tell people. I think I was a little afraid to tell...afraid that they would judge my daughter. As time has gone by and more and more experiences have transpired I have become more comfortable with the diagnosis and the label and therefore I have less problem telling others about it. I have evolved in my ability/willingness to share the diagnosis. Some times I only share when her differences are an obstacle or problem in the scenario she is in. Like in Girl Scouts when she wouldn't hold hands. But now, I don't force her into typical social situations like Girl Scouts and so I don't HAVE to tell as much. We were called into a conference in school with other parents who had issues with my daughter and how she wouldn't be "nice" to their child. At that meeting I flat out said hey! she has AS! -she can't be MADE to make nice socially with someone! We are here to learn! Yes, that disclosure changed their perception of my daughter-and maybe not for the better-but that's THEIR small minded problem!

I get HIGHLY perturbed by people who think of AS as "something we don't talk about". I feel the more you portray AS as a DIFFERENCE and not a DISABILITY (although there IS a need to level the playing field in some situations such as school) and refuse to "whisper" about it but speak openly about it as if it is not a PROBLEM TO BE FIXED, others will be more likely to feel comfortable about it (it can be a slow process). Some people are appalled that she "knows" she has AS---come on people!----to me that's like trying to keep someone from knowing they're blind or missing a leg---they're going to KNOW they're different---- and if you treat it like a dirty little secret then the child feels there's something wrong with them.

AS is not a daily topic of conversation for us but when it does come up I don't dance around the topic. When my daughter asks me about it I tell her the truth and let her know it's not something to be ashamed of. We are all different and Asperger's is just a word for a certain set of differences. At least that's how I view it and how I'd like my daughter to view it as well.

My general rule of thumb for life is I don't hide anything which seems to have served me well in general. What have I/we got to hide? What purpose would that serve? But also I'm not going around with a Neon sign saying 'look autistic kid' as it's not necessary to make an issue out of his difference.
I will mention he has Autism when I need to explain something that would otherwise seem odd - such as why he isn't answering someone's questions. People are very understanding and there seems to be a lot of awareness about Autism.
But then sometimes I just say something else like 'he isn't talking yet'. LOL recently on a trip on the Ferry he climbed on some people sleeping on the floor for a cuddle with them which woke them up. I quickly picked him up (they were smiling but still..) and just said 'sorry, he doesn't know what he's doing!' and ran off!
I just read Mama_to_Grace's post and that pretty much sums up what I think too.

My mom has always been the "tell everyone at the grocery store" type which really bothered me. She tried to explain to me what was going on with me, but I only heard that something was wrong with me. She had a moderate case of the curebies as I spent most of my childhood going to doctors, therapists, neurologists which really affected myself esteme. I think if she adopted the my kid is different but not disabled attitude, I think things would have been different. She did eventually get me the help that I needed to be more social, but as far as telling him about AS, It would be best to take the neuro-diversity route than the you have a problem with.....route. Had my mom told me that I was different but not impaired, that I needed help adjusting to a world that is made up of people who socialize differently than me, Things would have been different for me. But I cant blame her entirely cuz it was as much of a journey for her as it was for me. I was diagnosed in the 80's when things were not so accepting of differences. I guess in that way, she was a product of her upbringing.

Anyway, enough of my rant,
From my experiences, it is better to not tell folks unless it is a need to know basis. I always felt like one big disorder when she anounced to the nearest person what was going on with me and I could tell that people treated me differently afterwards, and that hurt.

I can relate to this so much. I do NOT want my son to feel the way I did. My mom definitely tried to help in her own way- My adhd dx was the only thing she ever advocated for me amidst her crappy/abusive husband. And in that she did advocate in such a way that was definitely demeaning. My bio dad took the opposite approach- "You're fine!!" which is what my entire support system (including my husband) chooses to do. My dad insisted that EVERYONE thinks differently and I wasn't unlike each person I encountered. That was the wrong approach too because I knew it wasn't true. I've thought about getting an adult dx just to sorta set a better frame work amidst my support system for acceptance. Their "Nothing's wrong!" attitude doesn't help our son blend in on the play ground and certainly makes an insinuation that something would be 'wrong' with him were he to get an ASD label. What's 'wrong' with being different? I love my husband and view my unwavering commitment to this marriage (he is military) as one of my greatest accomplishments. Unfortunately I really believe this one issue could ruin it. It is not some black and white thing with ASD being on the black side. There is nothing wrong with people who think or function differently and I do deeply plan to spend every moment mothering teaching all three of my children that. I just have no idea (because of my own social differences and lack of understanding of boundaries) where that line gets drawn in daily interactions. I'm at the point right now of wanting to come right out and ask my family "Hey, my counselor suggests I do xyz. How would YOU answer that question?"

Also, for clarification, my husband has no problem with our child being different- he is not a typical guy either. But his issue lies in the label. I can't get him to see the neurodiversity thing because he wont even go there with the idea of a label to begin with. I think he is more concerned about the world being black and white than actually feeling that way himself. His family often remarks about others as being "too intense" etc- I think they literally believe people can control such things about themselves.

Also I agree with the pp that he will actually seem different regardless of what we call it. On the playground the other day we ran into a little girl from his last year's class. He recognized her but called her by the name of a girl in his this year's class. I apologized to her and said "He has trouble with names" and she smiled sweetly and said "I know" and then tried to encourage him to play with her. This is a reason I love kids. Talk about accepting. I want to do what ever taught her to be like that with everyone

I was happy to tell my immediate family because then they would stop coming up with dumb reasons why my son was the way he was 'he has no father' 'your parenting caused it' 'he was probably molested'...because apparently all these things create PDD and sensory issues.

Other than that, I tell people on a need to know basis or if the information will help them in some way. The same way a diabetic would probably only tell people if they were going over there for dinner or someone was talking about their own diabetes.

I was happy to tell my immediate family because then they would stop coming up with dumb reasons why my son was the way he was 'he has no father' 'your parenting caused it' 'he was probably molested'...because apparently all these things create PDD and sensory issues.

Other than that, I tell people on a need to know basis or if the information will help them in some way. The same way a diabetic would probably only tell people if they were going over there for dinner or someone was talking about their own diabetes.

We are completely open with pretty much everyone. I don't walk up to the grocery clerk and give her our medical history, but if my son is melting down and the grocery clerk is giving me looks, I use that as an opportunity to educate and spread awareness. Same goes for family, friends, and extended family.

I feel stronly that hiding information, will eventually translate into feelings of shame for my son. I would also say that... if you are feeling a strong connection to the neurodiversity perspective, transparency and the acceptance of labels is really key there. Because there can be no acceptance of our diversity, if we are too afraid to admit or name our differences.

I have found the label really helpful -

To someone witnessing a meltdown the label makes sense, otherwise they just think the child is "bad". Now, I don't think that we want the spectrum associated with the meltdowns only, so I am starting to tell people more and more. People don't make much of an effort if a child just isn't fitting in. When they know why, I have seen much more understanding.

Is it possible that ny DS will be opened up to being hassled? Yep. Was he already being hassled? Yep.