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Were any of you reluctant to get a diagnosis for your child? - Page 2

post #21 of 30
Quote:
Originally Posted by Piglet68 View Post

 

As autism becomes more pervasive, and as those of us with kids on the spectrum get to the point where we can "spot one a mile away", I've noticed that there has been a whole new "problem" being discussed in the autism community, and that is what to do about kids who are obviously autistic but whose parents are either clueless or in active denial.

 

I cringed when I read this. The more I'm around special needs kids with ability to read their paper work (I work in special ed now) the complex I see the issue of diagnosing children. There are kids who have some of the same traits associated with autism who have VERY different things going on with them.

 

Kids can't be diagnosed a mile away. You are just making judgments based on what you see. As far as the other parents, unless you know them well, you don't know what is really going on with them. May be they consider this information private and something they don't need to speak with you and all the other mommies about. May be their child is mainstreamed and doesn't qualify for the same services as your child because they are higher functioning.

 

No one needs to tell you everything they have done so far for their child or what specialist say about their child. Judging parents and labeling their kids "from a mile away" just reflects what is going on in your head, nothing about their reality at all.

post #22 of 30

I'm really sorry that some of you were offended by my remarks. Just for the record:

 

1) I don't "diagnose" kids, I would never even suggest that I can do so. Even if a parent asked me if I thought their kid was on the spectrum (which has happened, since everybody knows my kids are) my response is always "go see your doctor". I'm not a jerk. 

 

2) For my kids, being as Aspie is a point of pride. They find other Aspies much easier to get along with, and since they already struggle with friendships as it is, it can be exciting for them to find another kid with whom they "click". I don't care whether the kid is Aspie, PPD-NOS, or whatever the hell diagnosis they have, its always great when they meet a kid with whom they connect right away. And since my kids are proud of who they are it is not unusual for them to just out and ask the kid (or even assume) that he is a fellow Aspie. Try explaining to a child who is proud of being that way why it would be wrong for them to suggest that to the other child.

 

3) I would never presume to judge another parent, especially one dealing with special needs. And since I was pretty late in figuring out what was going on with my kids, it would be pretty hypocritical of me to judge someone else for not knowing. I'm truly sorry to hear what some of you have experienced in your community, but please don't judge me as one of "those people" based on a few words on an Internet forum. You are being equally presumptuous and judgemental by doing so. 

 

4) I don't understand why someone thinking your kid might be ASD is a bad thing. So what if the true diagnosis is something else? In my world, it's not an insult. And the "spot one a mile away" comment was not meant to refer to diagnosing a kid, it was meant as: I get excited when a new kid shows up at a homeschool park day who is clearly having difficulties jumping in, then finds my daughter and her Aspie pals, connects with them immediately, and there are smiles all around. 

 

5) The only issue I have with parents who are trying to keep it some big secret is when MY pride and openness about my children's diagnoses, and my children's pride in who they are, makes those parents uncomfortable or judgemental about me. That experience recently happened in our little homeschooling/autism community and it is from that perspective that I wrote what I did. 

post #23 of 30

Piglet, I totally hear where you are coming from :)  I also don't think being ASD is a bad thing, but I'm trying to encourage my DS to be proud of who he is, language delays and all.  I've found that, parents who assume DS is on the spectrum find themselves totally befuddled as to how to interact with him and that makes him feel even more insecure since he doesn't have a label that people can understand. 

post #24 of 30

Thanks for your kind words, fizgig. It feels awful to think in a place such as this, surrounded by other special needs mums, that I would say something that made people feel judged here, of all places. 

 

Quote:
Originally Posted by fizgig View Post

I've found that, parents who assume DS is on the spectrum find themselves totally befuddled as to how to interact with him 

 

It's such irony isn't it? I mean, I spent so many years dealing with that with my kids who didn't have a diagnosis, and thus no label. The idea that a parent would get stymied not knowing how to deal with a kid who ISN'T on the spectrum seems almost comical, if it weren't so sad!

post #25 of 30
Quote:

Originally Posted by Piglet68 View Post

 

1) I don't "diagnose" kids, I would never even suggest that I can do so. Even if a parent asked me if I thought their kid was on the spectrum (which has happened, since everybody knows my kids are) my response is always "go see your doctor". I'm not a jerk. 

 

Then why do you say "you can spot one a mile away"?  I don't see how both statements are true -- I really don't. I'm not offended, and but I think that if you feeling you can "spot one a mile away," that you are diagnosing -- with very little information.

 

2) For my kids, being as Aspie is a point of pride. They find other Aspies much easier to get along with, and since they already struggle with friendships as it is, it can be exciting for them to find another kid with whom they "click". I don't care whether the kid is Aspie, PPD-NOS, or whatever the hell diagnosis they have, its always great when they meet a kid with whom they connect right away. And since my kids are proud of who they are it is not unusual for them to just out and ask the kid (or even assume) that he is a fellow Aspie. Try explaining to a child who is proud of being that way why it would be wrong for them to suggest that to the other child.

 

Haven't they had the experience of being WRONG yet? Of meeting a kid with a different dx, one they might not have even heard of? Not every body who is quirky has Aspergers.  Its easy to be proud of being Aspie, heck, it's almost trendy. However, there are other kids who are quirky who are dealing with more serious things they may not want to discuss casually, such as major mental illness. These kids *can* appear quirky and Aspie like, and not want to explain that no, they aren't on the spectrum, they are bi-polar (or whatever) and exactly what that means for their life.

 

The way you explain it your child is because it is poor social skills in our culture to ask certain things, even if they seem pretty obvious to us. We let people decide when to tell us certain information. A medical diagnosis is one of those things, and it isn't appropriate to suggest ANY diagnosis and ask if the person has it. This is part of teaching a child social skills.
 

 

4) I don't understand why someone thinking your kid might be ASD is a bad thing. So what if the true diagnosis is something else? In my world, it's not an insult. And the "spot one a mile away" comment was not meant to refer to diagnosing a kid, it was meant as: I get excited when a new kid shows up at a homeschool park day who is clearly having difficulties jumping in, then finds my daughter and her Aspie pals, connects with them immediately, and there are smiles all around. 

 

I don't think it is an insult either, I just know that it isn't always accurate, and that even when it is, another child or parent may be in  a VERY different place than us in making peace with it.

 

Asperger's Syndrome isn't a general term for kids who are different. It has a specific meaning. You can spot kids who are quirky (a very general term) and will mesh well with your DD's social group.

 

My experience is that often kids on the spectrum have a difficult time meshing *even with each other*. The "connects with them immediately" just isn't what I've seen. 

 

5) The only issue I have with parents who are trying to keep it some big secret is when MY pride and openness about my children's diagnoses, and my children's pride in who they are, makes those parents uncomfortable or judgemental about me. That experience recently happened in our little homeschooling/autism community and it is from that perspective that I wrote what I did. 

 

How have other parents been judgmental about you? That hasn't been my experience, and I really don't understand what is going on for you.

post #26 of 30

Every time I tried to reply to this last post it was a way-too-long reply. I don't want to derail the OP's thread, and I don't want to get into a lengthy self-serving discussion about what I meant. Again, I'm sorry if my remarks offended anybody. It was not my intention to do so. 

post #27 of 30
Thread Starter 
Piglet thanks for your responses! I'm sure everyone knows you didn't mean to hurt anyone just help! I appreciate all the responses I got. Lots of opinions which is great.
post #28 of 30

While I see LindaOnTheMove's point about not being judgemental or too quick to reach conclusions, a lot of people are still going to be that way.  You can't stop people from making their own interpretations of other's behavior.  Everyone does it.  Constantly.  We are always interpreting other people.  Now, if I notice a person seems to have a delay or disability that I recognize, I keep it to myself.  But I still have noticed.  However, some socially aggressive/exclusive people will say things out loud, sometimes deliberately because they are mean.  Sooooo, if a child has a visible delay, they might want to be prepared to deal with the people who are jerks. 

 

Also I think the spread of knowledge about autism is generally good.  There is a psychological concept called error of attribution or something like that, which means if Joe does something wrong, people assume it's because Joe is a bad person.  But when people are more emotionally and mentally mature, and more informed about the context, they can understand Joe is not a bad person, but made a mistake, was misinformed, didn't know the rules, has a handicap, etc. 

post #29 of 30
Quote:
Originally Posted by Piglet68 View PostAgain, I'm sorry if my remarks offended anybody. It was not my intention to do so. 


I wasn't offended. I cringed, but that isn't the same thing.

 

I think there might be a correlation about how you came across on this thread and some experience you are having with people IRL:

 

Quote:
Originally Posted by Piglet68 View Post
5) The only issue I have with parents who are trying to keep it some big secret is when MY pride and openness about my children's diagnoses, and my children's pride in who they are, makes those parents uncomfortable or judgemental about me. That experience recently happened in our little homeschooling/autism community and it is from that perspective that I wrote what I did. 

 

There is a massive difference between being proud and open, and demanding that others feel the same way. I suspect that the issues you are having is because of not seeing that difference, and not teaching your children the difference.

 

 

Quote:
EarthRootsStarSoul
 
While I see LindaOnTheMove's point about not being judgemental or too quick to reach conclusions, a lot of people are still going to be that way.  You can't stop people from making their own interpretations of other's behavior.

 

 

Its not a reason for me to make a parenting decision.

 

My kid has had evaluations and diagnosis, but to me, this isn't a good reason. 

post #30 of 30

I was very reluctant to get a diagnosis for my son.  I had a few people that gently suggested that he might be on the spectrum and I am now ashamed to say that it angered me and I was certain my son was not autistic!  His autism is mild so I was constantly searching for something else it could be.  I was of the mindset that I didn't want my child labeled.  I even had a friend who was a special ed teacher who warned me that if he was labeled it would always be there.  To me this label seemed like a horrible thing.

 

Then I got to a point where I could not hide my head in the sand any longer and had the school do an evaluation as well as took him to have a private evaluation.  I finally realized that being labeled as autistic was not a death sentence, my son was still the same loving adorable child as before the evaluation.  I now look back and view the "label" as I view a students "permanent record", it doesn't hurt you!  What the diagnosis and label does is enables your child to get the resources and help they need from the school and other agencies.  Once I accepted it I was able to then start working towards getting the information I needed to help my child.  He is now going into the 3rd grade.  He is in mainstream classes with two 45 minute blocks of time that he spends with the special ed teacher at his school where he gets small group and one on one help (he struggles academically).  He had gotten OT and speech therapy and is doing great.

 

I haven't let autism mold or change my child's life or our life as a family.  Autism is something we deal with and work on behaviors and other issues, but it isn't something that defines or limits my son.

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