Difficulty with non-spectrum parents?

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Do you guys find that it's difficult to associate with parents who do not have a child on the spectrum? I'm just now being thrust into the reality of being a parent to a child on the spectrum, and I'm realizing very quickly that as well meaning as some of my friends might be, they just don't have a clue how difficult the simplest of tasks are in our house, and why the term "special needs" exists. For example, I just mentioned to a friend that my son is getting overloaded in regular daycare, and that I might have to remove him from the program or see if I can switch him to a time when it's quieter there. Her response was basically "well, that's life, you can't go changing things every time he get's overloaded. He'll just have to get used to it". Honestly now, why would special programs exist for these kids if they could just "get used to it".

I guess it was just a huge eye opener into the world that I'm now entering. I'm starting to understand very quickly why parent support groups exist. I'm assuming that I'm not the only one who has had to go through this shocking transition, how was it for you?

I find it difficult to associate with parents in general, unless they are very talktive. But I know what you mean. My mother-in-law often says things like, "Why don't you just..." But in our situation, there's no "just".

It is hard. If there are people who are truly your friends, they will come to understand, though you have to cut them some slack that they don't "just get it" at first. It is a learning curve for them just as it is for us. You shouldn't feel bad telling your friend that no, him just "getting used to it" really isn't an option because he is different from NT kids. He won't get used to it, he will just continue to suffer.

Huh? I used to get over loaded and I "got used to it." My parents kept taking me back to noisy places so I "get used to it" and I did because now I can handle it now.

Yes definately, I have to choose who I speak to about it, I have friends who dont even know because they wont understand. I also get the usual comments and ideas of how to make it all so much easier that I know wont work. I also get the "Oh my kids exactly the same" line!

I think you just have to choose who you let in

I think you matured. Not the same as "getting used to it."

Hi,

It can definitely be challenging to speak with people who don't get it, especially at first, but be careful about isolating yourself or drawing your social circle only around other spectrum parents. These folks are generally great but sometimes it's nice to have an identity outside our kids.

I've had people say similar things about getting used to it, functioning in the world, etc. I generally say that yes, one day he will need to be able to function in the world and advocate for himself, but unlike other kids, he needs help acclimating to that and learning how to do it. For now, he can only handle what he can handle, later on we will be able to expose him to more and more, but doing that now will only cause anxiety and make him LESS functional, not more.

In my experience, most parents are just honestly curious and their questions come from genuine ignorance, not from hostility or challenging.

Best,

The truth is, there is really no way for them to ever truly "get it." I have made my peace with that. They do not intend to offend or to make ridiculous statements. They simply cannot possibly understand because there is no way for them them to put themselves in our shoes.

They can't do it, and it isn't their fault. It's a limitation of being human.

That isn't to say that I don't find it annoying. Of course I do. But expecting them to understand what it's like would be like expecting me to understand what it's like to have a kid with a terminal illness. I can't. I can imagine what it is like, but my imagination will never really get it right.

I think why people like that bother me the most, though, is that for as upsetting as it is for me...I can't help but think of my kids and how people will always think that "if you would just blah blah blah" somehow it would all go away as if it is simply a matter of trying harder. It makes me angry because I realize what a joke autism awareness is. We have so far to go for true acceptance of our kids (and the "kids" who have already become grown ups).

What about AS parents of NT kids? We have been where your kid is (depending on the level of AS/ASD) but not where our own kids are.

Lots of times our advice isn't appreciated.

It can be very frustrating. I love when people who have a NT child, or whose NT child is grown, tells me how they would handle DS and if he were their child he wouldnt have these issues. Seriously people...

I usually just respond with "thanks for that wonderful insight" to people like that, while I silently laugh myself silly. What I really love is when they give you "insight" that makes you feel like saying "now why didn't I think of that?" Like I love when people tell me "You just have to give him/her the message that that is simply not acceptable." The other day my son had a meltdown (my fault) because he got overstimulated by roughhousing and he broke into inconsolable sobs. For like 30 minutes. The advice that I got from one person was that I should "Tell him that crying like that is simply not acceptable for a 10 year old boy." Great. Maybe it isn't. But that doesn't change the fact that he was a bundle of firing neurons. So how is your feedback helpful?

Yes, I understand this too. My best friend is a lovely lady, but even her well meant words never help. She'll sometimes say things like, 'I've had days like that', when I know she simply hasn't even had an hour like it. And she'll make light of my daughter's behaviour, at a time when I'm feeling overwhelmed and just need her to lend an ear. But, she's the best friend I could ever have and she's very supportive, in a practical and emotional way.

I have another lady I speak to fairly regularly and one of her twin boys has Aspergers. She's great for chatting to. Her other twin is NT, so she's never thought to wonder if it's her parenting skills. If anyone tells her she should just do this or that, she can tell them straight. She's a great support for me. My daughter and the twin with Aspergers get on well too, as if they're made for each other.

Thanks for the responses everyone, it really is very comforting to understand that I'm not alone, especially knowing that this is just the very beginning. I found out that there's a parents support group in my area, so I'm looking forward to joining that.

I think that I do need to be easier on people too though. Being that I have AS myself, I naturally just "get it" without even having to really think about it. Autism obviously makes a lot of sense to me, and I need to learn to take the time to consider the fact that it's difficult for some people to wrap their minds around, and be more thankful when someone is at least willing to try.

Wanted to add that I especially appreciate advice from AS parents, but I don't always express it like I should.

I get this reaction all the time from my dad... He has ADHD and I debate whether he has Aspergers or not. For the sake of arguement I am going to say no. Anyways, there are times when i want to be taken serious and he wont.. then the opposite will occur. I have been having 'other issues' with him right now. The most recent statement (mind you this isn't exact but its to this extent) has been,"You need to put your aspergers aside and push on.. you are not your sister." My sister is High Functioning Autistic. She won't ever be able to live on her own and is well.... how do i say it.. very different yet much the same as me. The biggest difference is that I can very well live on my own. I understand enough on how to pay bills and enough social skills to push through.. I just think differently primarily.. Paperwork wise I am High Functioning Aspergers Syndrome.

I also get this aposing idea from my mom involving my sister. Mom would be so proud of her for doing everyday things (chores related). (she is not severely autistic or anyting just a tad immature and slow in areas) She can accomplish everyday things all the time.. she has always been able to do these things.. then they give her lots of praise.. not to say she doesn't deserve it.. just that it feels the praise could go else where other than chore work and putting herself an 'apartment' in my moms home.. ok that deserves some praise but still. <.< I don't know maybe i am just a bit mean myself.. who knows.

Support groups are great, as a new member they will probably let you talk as long as you want, get it all out there! You will feel better too as they will chip in and reassure you that their kids are exactly the same. Then when others talk of their experiences you will hear how similar your life is and feel better. You can walk away from it feeling like you are not alone. Even if you dont have a formal diagnosis they will still welcome you and clarify things for you. You will feel better for letting it all out and wont need to talk to others who dont understand, save it all for your new group of friends! They will put you on a mailing list and let you know about events and groups you might be interested in Then you will become a valuble member of their group and you will be able to advise others, which is a great feeling. Especially as you have been there yourself, Im sure you have a lot to offer the others.