Friday, January 23, 2009

Do Aspie Children know at they are Different? - Part 1: Parental Perception

The Aim of this Series
I'm often asked by other parents for my thoughts on telling children about their aspergers. Will knowlege of the condition help or hinder them? In fact, taking things one step further... will the knowledge of aspie characteristics actually cause the differences between the aspergers and neurotypical children to become exagerated?

To know the answer to this, we must first examine adults who were diagnosed with aspergers late in their lives to determine whether they felt "different" as children.

Having been diagnosed at 37, I guess I'm as good a subject as any.

Parental Perception
There's no doubt that my parents knew that I was different from a very early age and there were lots of things that I did which were considerably different to other children.

One of the most obvious differences was that I formed an unnatural bond with a blanket which lasted far longer than it should have. My mother still tells stories about how she couldn't take me shopping without the blanket, how it took up most of the space in her shopping trolley and the emotional anguish that blanket separation, and even wilful damage by other children, would cause.

The blanket fascination lasted far longer than my parents ever suspected. I went through several blankets, all of them with names, and often with an imagined "blanket pedigree". That's right, most of my blankets were "related" to eachother in some way.

Long after it was "shamed" into hiding, it continued way into my teenage years. In winter, I would often be wearing it in front of the television and in summer, when it was too hot to have it on me, I'd often fall asleep with my entire body hugging it like a body pillow.

Truth be told, I still like to keep a blanket and can often be found to be watching TV with one wrapped around me - even in the 30 degree (celcius) heat of Summer. It's that feeling of being tightly wrapped (hugged) without being stroked or tickled, that a blanket can do much more effectively than another person can. Of course, these days I'm not so possessive and the kids often take it off me with no complaints. At least all the stuffed animals are gone. (I've got my wife for that - just kidding).

Above: A picture my parents snapped of me sleeping in the hot Australian summer aged about 10. Note that there are six stuffed animals sharing the bed as well as a blanket.

Knowing I was Different?
In terms of the behaviour described above, the fact that I hid it from my parents in my teenage years suggests that I knew that there was something "wrong" with it. I certainly perceived a difference but whether that detection was entirely due to my parent's complaints or whether I genuinely understood that other children didn't have the same fascination remains to be proven.

There's much more "damning evidence" in my early interactions with my peers.
I'll cover this in my next post.


The Emery's said...

Unbelievable! My 12 year old does the exact same thing. So many times I find myself telling him to 'put that blanket away'. He literally carried the last one until it was shredded. He took the one remaining shred and attached it to his next blanket.

I know your post was deeper than the blanket, but I had to comment on the blanket issue.

Anonymous Ghost Writer said...

The issue of telling or not telling is a double edged sword, both ways could lead to significant emotional trauma.

I myself was diagnosed at the age of 18, after a bout of suicidal depression. I have since determined that my depression was caused by the fact that I knew something was off, either me or the rest of the world.

Since then I have devoted a significant amount of time to thinking about what things would be like if I had had a diagnosis when I was a child. The only answer that I can come to is that I would not be the same person that I am now. I can see that my drives and passions, excepting those linked to my autistic tendances, are based largely on the troubling experiences growing up with an undiagnosed PDD.

These experiences taught me many great and often painful lessons about life. I now volunteer with St John Ambulance, have a small but close and loyal group of friends and fantastic job. Without these lessons I would, at least in my own opinion, be less able to function in this world. However on the flip side knowing about my AS early would have saved me significant amounts of pain and suffering throughout childhood.

For a parent the decision of telling or not should be based on what benefits can be gained by either path. I am not qualified to say which way is best and I'm not sure if anyone else is either, which ever path is chosen something will be lost. Often times the best lessons in life are painful, that is what makes us remember them and not go back again. So in my opinion what pain may be saved is not the only thing that must be considered.

As for myself, looking back now, if someone asked me if I would rather a diagnosis early or later in life I would have to say later. Although it was bought at a high price my life now is far better than anything that I could imagine being if I had known earlier in life.

Rachel said...

I was diagnosed late (at 50) and I've wrestled a lot with the whole question of whether I'd have wanted to be diagnosed as a child.

Part of me says no, because everything that has happened in my life has led me to this moment in time, and this moment is wonderful. I have a great marriage, a great kid, and friends I love. Had I been diagnosed earlier, my life would have taken a different trajectory, and the people I love so much wouldn't be in my life at all.

But part of me also says, yes, I would have liked to have known why I felt so different from other people, why I couldn't seem to reach them when my heart was so full of love and I wanted so much to share my thoughts and feelings with them. I would like to have avoided (figuratively) banging my head against the wall for so many years struggling against my neurology. I would like to have spent more time developing my strengths and my interests.

While I can't change the past, I firmly believe that knowledge is power. If I had a child with AS, I would tell the child. I would also
a) present the diagnosis as a good thing, b) not let the child use the diagnosis as a pretext for giving up on things, and c) impress upon the child that being different is a source of great power and great opportunity.

Yes, it's very hard to be different, and very hard to be in the minority, but we are far from alone.

Nachtus01 said...

Well this is certainly a most interesting topic!
I know for me, I knew something was different about me when I was young, everyone else knew as well.
However, no one, that I am aware of, knew what Aspergers was, so it was more or less a moot point.
But the things that made me so, "different", (for the most part), weren't bad things.
I had an incredible ability for memorization. I was considered to be mentally gifted. I had a passion and a zeal for knowledge that drove me to study almost everything.
To the best of my knowledge, I am the only person from my high school, that has read every article in the World Book Encyclopedias, without being required to.
Truth be told, knowledge was, and still is, my "blanket", although now I use the internet rather than the local library ;).
I hated most sports, I think my mom liked that, knowing she wouldn't ever hear about me breaking some limb during a game, but this is where I really started noticing that I was different.
I cannot think of a single classmate that didnt like football, or soccer, or basketball.
Just me.
The other students realized that I didnt have the desire for these sports, and realized I was different too.
And this is the start of my social, "Grand Canyon".
If we had known as much about Aspergers as we do know, it probably would have been a great help, not just to me struggling to fit in, but to my teachers, my parents, and my siblings.
I believe that in today's age, once a definite diagnosis is made, a kid should be told about the issues they face.
This will allow them to better understand themselves, and with socialization training, they might be able to, at the very least, learn to adapt better to a world that, in its current state, is not going to change to fit their needs.
While I cannot say that my life has been horrible, if I could have received socialization training, I might have adapted even better than I have to date. I might have been more successful at choosing careers, and keeping them, choosing friends and keeping them, and, even though I do view my marriage as a striking success, I have no doubt that it probably would have made even that show some improvements. Not to mention that it might help me with my interactions with my children.
Knowing about AS when I was younger, wouldn't have been much if any help. Thankfully though, things have changed, and are still changing, and from where I sit, most of it looks to be for the better.

ASpieboy said...

I suppose it all depends on the child in question. If the kid knows he/she is different and is having trouble in school, then yes, it is time to tell him/her.

ReineDeLaSeine14 (Stephanie) said...

I knew. We ALL knew. It wasn't until I was 19 was I diagnosed.

I wish I did know really what was going on. I would have actually gotten help instead of being ridiculed and being told that I was wrong...I felt wrong, I thought wrong, I spoke wrong...

I think that also telling a kid may make them feel even more with Asperger's I'm not into "correcting behavior" but am into "making people around us aware" of our differences and into respecting and accepting of them.

I still sleep with a mound of blankets and stuffed animals and I'll be 21 in a month.

Arkityp said...

i knew around age 4, but wasn't diagnosed until age 26. i think if someone had noticed, i would have turned out a lot differently... which could have been better or worse.

meep said...

My mother called me her "space alien". She knew from the day I was born that I was different. I didn't make a sound for 3 days until the doctor scratched my foot with a needle.I was also far too much like my ADHD-diagnosed father. I don't know that it would have made all that much difference in my childhood or teen years. I have gravitated towards the neurodiverse my whole life. Nearly all of my childhood friends were then or are now diagnosed as bipolar, schizophrenic, AD(H)D, OCD, etc. I suspect a few of them are aspies also/instead( I went to a rather aspie-friendly school and the population was probably overrepresented). I knew I was weird but my group of friends used that as a badge of honor. My family members mostly kept to their rooms and I got a lot of downtime and my school used rather non intrusive lighting and had no problem with me stimming. As a result I had a meltdown maybe once a year as a kid and could usually do so privately. But had I known there probably would have been fewer bouts of depression in the college years , which is when I started to feel out of step with the world and dealing with some major sensory overload for the first time. I did get a diagnosis a few years after that but it took a while to get rid of the idea that I was broken when employers and boyfriends got frustrated with my rocking and told me I couldn't be like this, that I was selfishly trying to be different. So I wish I had known earlier but I'm not sure if needed to know as a kid.
And yes I even in extreme heat (I grew up in Florida) I still feel calmer with a blanket on my lap.

Sharon daVanport said...

I have been asked numerous times if I would have preferred knowing about my Aspergers as a child, and I guess I really struggle with my answer.

On one hand I feel that it would have given perspective to the challenges & gifts which oftentimes seemed out of place with my peers and siblings. On the other hand, I believe my parents pushed me to continue moving forward with my goals as they had not a moment to pause and wonder "IF" I was capable of whatever I aspired to accomplish. I hear time and time again how many parents (oftentimes unconsciously) respond to their child on the Spectrum with "kid gloves" because their child has autism....hmmmmm?

I received an email from a mother who believed "autism stole her child" and she cried of how all her hopes and dreams for her son would never come true....she lamented of how her son would never aspire to what she had invisioned (like sports or medical school.)

At first I was confused by her despair and I assumed that her son was severely handicapped in some other way besides his diagnosis of autism. When I inquired about this, she responded with, "No, he has Asperger's Syndrome."

When I opened up to this mom and shared with her about my Aspergers she began to re-evaluate her thinking. She had originally contacted me because she knew my son has Aspergers and she was completely unaware that I am an Aspie as well. Anyway, I wanted to share this story because my experience with Aspergers has been greatly influenced by "perspective" (from myself as well as others.)

My son's diagnosis of Aspergers came a few months before he was to begin kindergarten. He will be 16 yrs old in a few weeks and I can say with conviction that I believe he has benefited from not only an earlier than average diagnosis, but that we never kept anything from him. In fact, I never thought to do such a thing.

My son has always known about his diagnosis. He has always understood that he is an individual first and "aspergers" is only a part of his individualism. He has grown up understanding not only that he has a unique way of processing information, but more importantly he has grown up understanding "WHY" he processes information uniquely with an awareness of his own sensory code.

This awareness has inabled him to be an effective advocate for himself, and he has an extremely mature and balanced view of who he is as an individual. I am constantly told by his teachers and professionals how amazed they are with his maturity level.

Thanks so much for posting this topic. No doubt it is a subject that we all will face at some point:-) See you on the blog!

Rachael Elizabeth said...

hi i know how it is with aspregers somtimes i get really scared for no real reason and somtimes like today i feel so alone and i cant seem to even talk to others out side my home and no matter how much fun others are having at my age i cant do those things it just like if i do those things i get hurt or somthing but i know i would not but i still feel that way also if u look at my blog it tell u a little more about how aspregers affects me i dont understand it fully on what going on with me ppl keep asking me to give eye contact i cant and i get really upset if someone touches my stuff or puts things i put stright lines out that line i also dont like sounds that are loud even if it a good sound it scares me

Anonymous said...

I have spent my whole life knowing that I was somehow different and judging by the difficulties I've had with other people, so did they!

I've just turned 35 and I suspect I am an undiagnosed aspie. I would like to have known what made me different and been reassured that it wasn't because I was somehow stupid or a bad person.

After spending so much of my earlier life wishing I could fit in and be like other people I'm now very glad that I'm not - I like me, as I am.

I also have a very nice cream fleecy blanket that I love to wrap up in ;)

Becca said...

My husband, 32, recently accepting his Asperger's, tells me about his horrible childhood where his parents always were telling him he wasn't good enough and wouldn't amount to anything and why was he the way he was and why would he do this or that. His brothers and sisters thought he was odd and laugh when I describe the odd sounds or spastic thing he does with his hands because they had remembered him doing this as a child. I feel that if his parents and siblings would have realized these oddities as that of Asperger's and not just that of a weird and lazy kid, that he would have had a lot happier childhood than he did. His parents still to this day think there isn't anything wrong with him or his brother (probably Aspie too), but that they are just dumb and lazy and don't make the right decisions. That makes me angry.

As far as my son with Asperger's, he is 9 and I'm not sure he knows he is that different or not. Some things he does as far as the way he gets upset more easily about certain things, or the way he has a processing delay in his thinking or rather producing. I think only recently since we have been setting up things a little differently in the classroom for him than the other students that he knows he is different. He knows it is not his fault, and I am lucky to have an Aspie spouse, because when discussing Asperger's with my son, I just say things like, "you know how you and Daddy think differently and your brain works different like his......" I find it really easy and my son doesn't take it as a bad thing because he respects and looks up to his dad and sees how his dad has worked through things.

As far as if or when we should tell our children that they are different, I think at an early age I suppose there is no use to it, and maybe some think to hide it from their kids.

I didn't want to come right out and tell my son there was something "wrong" with him, but over time I didn't want him to think he was stupid or that it was "wrong". I saw the pain in my husband in all the years teachers and parents thought he was a waste because he was so smart yet he processed things differently. I wanted to make sure my son knew he was brilliant no matter what some dumb teacher thought or if other kids said anything about him being weird.

I think it works better for my husband and my son that they know about their Asperger's and they know they have to work things differently but they can still achieve the same goals and succeed just like anybody else.

Stacia said...

My daughter is 5 and was diagnosed with Aspergers last year. I'm very open with my family and friends about it and this question about telling her has been on my mind. Thank you for posting about it and I loved reading all the comments. I do believe that we will tell her in a few years, once she can have a better understanding. Your pictures was great of you sleeping with all your stuffed animals as a child. She does the same thing, we've finally got to a point where the animals don't have to be specific ones...they just have to all be there! She also has an extreame attachment to a Bunny and Blanket. They go everywhere with us.

Diane said...

My almost 9 year old son has just been diagnosed with Aspergers, so I've been searching the net for more information, and found your blog. Great reading for me as mum. Thankyou.

We have talked about it, and he knows he has it. I can't see how not knowing would help him. It doesn't bother him yet, but I'm sure it will help him as grows up.

It seems that not knowing what was wrong, has been the biggest problem for so many older people. And also for me, until recently. Now that I know why he does what he does, it helps me because I can help him.

I enjoyed reading about the blannket.
We lost his blanket (Joe) on a holiday last year, (he screamed for it every night), so when we got home, he found another one with a similar pattern, and he named him Joey, because he is Joes son.
He also has about 40 Beanie kids and they are all related of course... said...

I'll note, with a laugh, that my parents went back to Greece from Turkey, all for the loss of a blanky, dedicated as they were to their 4 yr old w/ ? issues. That was almost 37 yrs ago.

Thank you to all before who commented previously with their experience, strength and hope on this matter.

We are currently struggling with these issues and could use help regarding “how” perhaps more than when. Specifically, we are concerned with, amongst other things: labeling issues including correctness, potential justifications by the child, issues of self-esteem (any way), but most important would be as stated a "age-appropriate" manner, reluctant as I am to use that specific terminology based on appropriateness of it as a bearing.

My daughter, age 6, was diagnosed with Asperger's syndrome last year by a specialized psychologist, after concerns were voiced by her school about repetitive movements approximately a year prior.

Both my wife and I knew from an early age that she was different, likely gifted with learning disabilities as she is extremely high functioning in most areas, but we struggled and continue to struggle with the issues for a variety of reasons some of which I allude to here. I should note that she has understood for a while that she is different.

A secondary evaluation by a neurologist said that Asperger's was over the top and that we just had a quirky kid. On that note, she, more often that not, fails most of the traditional tests, e.g. she has above average classical empathy, handles change fairly well, although resists it emphatically, and is popular in kindergarten (at least for now) despite certain social issues some of which likely (also?) fall into an ADHD category.

Then, there are other times that it is so very clear to me...the interests and/or obsessions, changing as they may be, eye contact (although this is improving) and the occasional bloody tantrums. It has forced me to redefine empathy in the manner that Dave does...e.g. that others have different interests than dragons, turtles, Pokeman...e.g. YOU. Taking her off milk seems to have led to improvement.

It is painful for me, amongst other reasons, because I see and have seen so much of myself in her, more in fact in some areas and therefore can't help to wonder if I have Asperger's syndrome too. Or, if I'm just ADHD and/or dyslexic, ergo..quirky too. I also fear what the future may have in store for here as I suppose most parents do, spectrum and/or otherwise. Of note, I am a masters level scientist with my own company, but can't help but wonder the degree to which my past issues (with tendency to focus on the negative) might be explained by appropriate diagnosis.

Unfortunately, I can easily recognize that the ethical issues involved are vastly more complex than the binary manner in which they are presented by certain commentators. Certainly, if a child asks, they are entitled to an honest, comprehension-appropriate answer (whatever that may be). Aside from this, where good faith becames bad faith, I'm afraid to say to my fellow Aspies and their parents, is somewhat grey. I think we all understand that age is a tepid barometer, at best based on what we know about non-parallel developmental aspects of the condition. So, if anyone has any specific advice here, I'd been happy to comment on their circumstance as my ability to be objective, regarding my own circ is obviously lost.

What I can say, if not already implied, from personal experience, is that lack of diagnosis and in hand appropriate understanding of circumstances leaves the affected child / adult in very dangerous places.

Respectfully submitted...jg

Michelle Chubbuck said...

My ten year old son John loves his blankets too, but even more important to him are his stuffed animals. He must have 30ish small and large stuffed animals. And if he can not find is very disturbing to him.

Anonymous said...

Are you able to provide any info on the effects on an aspie child when one parent is still in denial after 5 yrs of having a diagnosis and receiving services. My sons father from whom I am seperated still refuses to accept the diagnosis therefore obviously doesn't implement any of the necessary therapies and or behavior mods that take place at school and home with me. I can see the stress and anxiety it exhibits in my son and obviously myself and the rest of the family unit. However if you could provide some further insight it aould be greatly beneficial.

Anonymous said...

It sounds like you have a solid marriage. Yet on so many other websites regarding aspergers - marriage with an NT is nigh impossible. I am dating an AS and am NT. What type of questions might I ask him, to determine if my emotional needs are capable of being met as an NT. I KNOW he is capable of "feeling" love, but I do not wish to torture him with my NT expectations. I want to have a chance at marriage with him. But would rather cut it off now, than harm him in the long run, if its doomed from the beginning. What qualities can I look for in him that may assure me, we are capable of interaction without harming each other. The other websites are very negative regarding AS/NT marriages.