I was once afraid of my son being labeled....not anymore...

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In the long process of getting my son evaluated by several professionals, I often found that I was terrified of him getting a label, and also that he would be misdiagnosed. I guess because I worried about him being different than everyone else, because when I was in school kids were picked on when they were different, not by me but I saw other kids do it. People would often tell me that the label didn't matter, what mattered is that he get the services he needs. I never understood that. I understand it better than ever now.

My 3 year old son got a mild Asperger's diagnosis about a month ago, he was able to start his services (special ed preschool class, speech, & OT) a few weeks before because we had him evaluated through our school district before we took him to the developmental pediatrician who diagnosed him. His teacher received the report stating his diagnoses last week and she told me it's a good thing he has a diagnosis because she did testing on him and he scored too high to receive services without a diagnosis. I was so relieved we had the Asperger's diagnosis because he really needs these services. I can't believe how close we were to losing them.

I guess I wanted to share this because I know that there are parents out there who are afraid of a label and I wanted them to know I was there with them and have finally realized that it will only make him stronger in the long run. I too have had professionls tell me, before his diagnosis, that he was close to "typical" and that they weren't sure if he was on the spectrum, but in my heart I knew that he was.

My son is a smart and very special little boy. I am glad he qualifies for these services so he can learn how to cope in life. I know how extremely important early intervention is. The label has a whole new meaning to me now.

good to hear that you've had success with receiving services....labels can, indeed, be helpful

The main problems with labels are that they can be misused.

When appropriate, your son should know about his label and he should know about the famous people who share his label. He should be taught to see his label as something he can be proud of - not something that he needs to hide. Of course, you'll need to make sure that he knows what to do if any insensitive children try to pick on him because of qualities his label brings.

The other thing to be a little wary of is the "remedial effect". This occurs when the previous year's teachers tell the next year's teachers that they're getting a "special needs child" and those teachers make the assumption that the child will be slow - and put them into a remedial class without first testing their abilities. Make sure that you keep an eye on what is happening at school with your child and all will be well.

Anyway, Congratulations on getting/accepting the label - and thanks for the post.

Getting hung up on a label is one of the worst things to do. It's good that you can accept it.

Problem is, it isn't so much about "being different". It's about "how will he be treated, now that it's openly acknowledged that he is different?" You can't change having AS or not, but you CAN change how people behave towards you and how you behave towards yourself with a label.

Problem is, the AS people that I know who didn't find out until their 20s have NOT had major struggles with life. They have excelled in school, held employment, and had some friends. They probably wouldn't have been fully happy if they NEVER found out, but finding out in University let them avoid the whole "I'll never amount to anything, because I'm disabled" mentality that I've found in the people who were diagnosed in childhood, and received therapy and accomodations.

They already knew that they had something going for them, so they viewed AS as being not such a big deal. If a person hasn't accomplished much out of the ordinary, then a label could be a source of great insecurity and defeatism. This is made even worse if the child is considered to be of marginal ability (in special ed). Heck, where I come from, children who take special ed in high school aren't even ALLOWED into post-secondary education.

I know that parents are often worried, because they know very few to no adults with AS. But one thing to remember is that your child isn't the first person to have AS. Even though many therapists would like to tell you otherwise, the majority of people who ever had AS did NOT wither and die without early intervention. Most coped perfectly fine, although they never became "Mr/Mrs Popular".

Either way, if I had the choice between never receiving intervention, and receiving intervention, but being extremely restricted in life due to "the remedial effect", I would prefer to just do it the normal way. The remedial effect can mean anything from being unable to attend higher-education, to not being able to get a paid job due to the (internal) belief that people with AS are only suited to unpaid or garnished wage work experience programs.

Thank you all so much for your replies. This is all new to us and we appreciate everyone's advice. We are constantly learning new things about AS. I am open to any and all advice. I want to try and make sure that my son is confident and feels good about who he is. I am taking it all as it comes and just want the best for him.

good luck gusmom2006. i was dx'ed at 46 and i wish i had grown up in an era where they could identify what the issue was and how i could best be helped. I suppose how one uses and interprets a dx is different in different cases.

I think gbollard above, outlines it fairly clearly and wonderfully.
My nephew was dx'ed last year with HFA and the kind of services he is able to access in australia are fantastic. He is getting help where he needs it and is also getting help in terms of esteem and self-acceptance and love.

i think a label can be a great thing - it has been for me even at this time in my life - and you sound like the type of proactive parent who is really wanting to reach out and find out more and do all you can to support gus.

good luck and welcome to WP.
i look forward to reading more of your threads and posts.

We haven't experienced much "remedial" effect and I think our son truly believes that he will do well in life - that there is no reason for him not to. Yes, he knows he has problem areas, but he also knows they can be dealt with effectively. Currently, that involves outside support; long term, he understands that the "work arounds" and "manage anyways" will all fall to him. If a child grows up in an area that really understands AS, there is no reason the label should ever limit him. AS kids can be GATE (gifted and talented) students as well as special ed students - it's an interesting puzzle for schools but one that they are, by necessity, learning to figure out, at least where we live. Not perfectly, but there is progress.

To gunsmom - I worried about the label, as well, but so far it's been a benefit. It explained things to us and to our son, and it gets him the services and accomodations he needs. We can always reject services and accomodations, and we do when we feel they really are too disabling.

with an attitude like this, he will be fine.
how incredible to read.

Just a couple of things to add to what others have said:

You only need tell those who need to know, if you change your mind and decide your son is better off *not* getting special treatment (which is a possibility if symptoms are not too limiting), you can always stop! I'd be tactful and consider carefully who I told. The experience of many here, and my experience as a parent, is that even family members can behave in ways not conducive to the childs well-being when you mention a 'label' to them. Any label, not just AS.

Also, I'm surprised that an AS diagnosis can be accurately given to someone as young as 3. Given that the most obvious problems with AS is social difficulties, I would have though they'd have to be at least 6 or 7 for these to even begin to emerge with any certainty. You mention speech therapy. The DSM definition (for what it's worth) actually states that for AS to be present, speech development must be close to normal. Speech problems are actually indicative of something other than AS.

I feel awful for casting some doubt, particularly as you mention you've had doubts about correct diagnoses, which is understandable. From what you say, it sounds like your son is not seriously impaired, so you're wondering if it would be best to just let things continue as they are? It is a difficult decision, especially for one so young.

Finally, a little expectation management AS is so new, there are *no* intervention programs with guaranteed results. The children who have been treated such are still too young to say whether there was any long term gain. Every child is different, so you'll need to be sensitive to how your son reacts to his program. What may be good for one child may not be good for another.

Thank you for your post, I will try and explain . He can talk quite well. He can ask me in a full sentence for anything in the world he wants or needs. He has talked clearly from a very young age. When we are reading books, I can point to any object, shape or color and he will tell me what it is. He is in speech because he does not have social communication skills. He will not have a conversation, my 1 1/2 year old daughter has way more conversations, although you can't understand her , than he ever has. She also will run right up to any other children or adult and interact with them. He has never or won't now, interact with other children. He get's stressed out when he is around a group of people, until recently, he would only run around and make loud vowel sounds. Since he's been at preschool he's actually not done it as much. He is slowly starting to interact with adults, but rarely with another child. When he was younger, he would actually address and interact with my aunts and uncles when he saw them, and then just stopped. When he was being evaluated by the developmental pediatrician (who has a son with AS) she pointed out a situation that made it all make sense to us. The first 10 minutes he was in her office, he went to the toy box, took out some trucks, grouped them together and started playing with them, after about 15 minutes she asked if we saw how he was playing, she noted that he hadn't even looked at us for 10 minutes, he didn't try to show us the cool trucks he was playing with, he didn't want or need our approval or interest in what he was doing, let alone see if we were still there. She said that most 3 year olds would not do this. He has never picked up a toy and brought it to me. She also said that it is a red flag that he learned his shapes and colors so early. You can also sing him any song once and he has it memorized and will remember it forever He LOVES music!

As far as all the services go, I really think he needs them with or without the diagnosis, I see other 3 year olds and they interact with others so much more, he is so very solitary. I don't know what the results will be long-term, all I know is since he has been attending preschool he has made so much progress, he addresses my husband and gets excited when he comes home from work, before preschool, he never acknowledged he even left! This is only one small example of the progress he's made in a short time.

I really appreciate your comments, I hope I didn't ramble on and on

I myself never realized I had AS until I was an adult with a marriage, child, and two college degrees. However, I would not call myself well-adjusted at all. If you call rarely having a freind and suffering bouts of depression, panic attacks (meltdowns) and suicidal ideations ok, then fine, let people wait and hope they pull through without intervention. It was actually my husband pointing out how often I repeated my same stories, spoke obsessively about topics, and freaked out over changes in routine that brought it into focus for me. yes, I managed, but how awesome would it have been if I'd gotten help sooner? I might have learned to make friends in college and how to handle being approached by a guy and gone on some more dates. I might have married my husband sooner, years sooner, and had more children.

I have to say, the day we got my son's diagnosis - a HUGE weight had been lifted from my shoulders, because I finally knew what was really going on with my son. I had a name and something I could research!! I embraced the "label", because it's just a word. My son is still my son. Nothing changed. He's the same boy now that he always was. Yeah, he has some special needs. That just makes him special.

All of that said, the label has helped. Getting an IEP for my son probably would be twice the pain it is right now without having that letter. My school was more than willing to work with me, and to do evaluations on him just because of that little letter, and now that my son is in 4th grade, he really does need the help. Aside from that, I definitely don't go around thinking of the autism first and my son's name second...I just think of my son.

Gusmom2006, thank you for sharing your beautiful story.

I totally agree that we as parents need to face the music if we are to truely help our dear child. Your child won't miss the 'label' for some time yet (if ever). But they will miss the services then need.

As to how we parents feel about the 'label' on our child, it is of no importance whatsoever. If we don't stick up and stand by our child in the face of discrimination, who will?

There is a chinese saying, "If I don't go to hell, then who will go to hell?". Our AS child is akin to being lost in 'hell'. If we don't 'go to hell' ourselves and find our lost child, who will? The only thing stopping you is your pride. Which is worthless.

Those famous people you speak of never had a "label" and whether or not they would have accepted a "label" is improbable. They might ihave been merely phenotypes of Aspergers/HFA, but they didn't require special education and were all highly successful which says to me that these brilliants were merely brilliant and managed on their own and did not have severe impairments that warranted special interventions. They were able to compensate.

Just be sure to tell him not to go around mindlessly broadcasting himself as an Asperger's child. That will attract alot of unwanted attention and deny him any chance of having any normal friends.

Reading the title of your thread reminded me of a wonderful book I recently read called Martian in the Playground that is written by an adult woman with AS about her experiences in grade school. She specifically addresses the labeling issue and says something akin to "if you don't label your child he will be labeled anyway...I prefer the AS label to the labels that others came up with". That really struck me, because as a former school teacher I can attest to the fact that this is true for any kids who stands out in the crowd.

I remember so well when I had those gut feelings that my son wasn't developing "typically"...I called our school district so that he could be evaluated by the early childhood special ed. team. I think deep down inside I was hoping they would say they weren't concerned and I was crazy. Instead they detailed a list of their concerns, which pretty much paralleled the ones you mentioned about your own son. After they left I hated them for saying those things. I went straight to an autism chat room and described the "concerns", where I was told those things were, indeed concerning. But a mom there told me, "Even if they give him a label, he is still the same little boy you had before he had the label." I don't know why that was so powerful for me, but it was.

Once I got over the shock of being told that what I had feared was true was indeed true, the label just became a key to support and therapies, which were so helpful. Although in many ways he was fine as he was, in some ways he wasn't a very happy little boy. (As an example, he could not sleep at night more than an hour at a time and would then fall asleep on the floor while playing during the day, but wake up the moment he was laid down...he seemed like he wanted to play at the playground but was terrified of any of the equipment that moved...) And therapies have helped these pieces tremendously!! ! OT helped with many of these things and as his speech progressed he would actually say, "Mom, I'm not afraid of that anymore!" I can't count the number of times I have stood in situations that are every day occurrences for most parents, holding back tears as I watch him do something he had always wanted to but had never been able to do before.

I know I've only had our experience, but I think in my son's case early intervention has made a world of difference in his quality of life. Will I ever really know what it might have been like without it? I suppose not. And I have no doubt that maturity has helped a ton---now he can tell us what is bothering him so we know how to help. But there are things that are SO much better now...when I look back at journals, notes, etc. I have actually forgotten how distressing some things were for him at some points, because now those same things wouldn't phase him. My advice would be to seek out whatever help is needed to help HIM be successful and happy. I think where early intervention can be detrimental is when parents in a panic seek something out that will "take the autism away" and try to make their kid behave exactly as they imagine he would have when they imagined that he was NT. But it's pretty obvious from your post that is not your intention.

You seem like a wonderful mom! Your little guy will already be many steps ahead with a loving, supportive family. Thanks for sharing your story.