I know a couple whose son has auditory processing problems, as well as PPD. They do not want him to know his diagnoses. They had him in an autism research study and would not tell him what it was for! He is 15, a freshman in high school. His main problems are focusing, and he can get easily distracted and "obsessive" about one aspect of what a person talks about. He is having increasing problems in school. He thinks he will go to college, and his parents are hoping that's the case but are not sure because of his difficulties...which of course he doesn't even realize. He puts a lot of pressure on himself and blames himself when things are difficult for him.
I myself have a visible, physical disability. Therefore, my parents obviously couldn't hide it but also did not address it, ever. I find this is common with parents of children with disabilities--they think that talking about it will label their child and point out his/her shortcomings to him/her, and it's better to treat him/her like everyone else. This is certainly admirable and understandable; HOWEVER, doing so by never speaking of the disability makes the self-confidence problems that go along with being different even worse (because other kids certainly do not act like physical disabilities don't exist, unfortunately). Disabilities make people in general uneasy/uncomfortable, and realizing that your own parents didn't want to talk about it can enhance the idea that disabilities are something embarassing/shameful/not to be talked about. I try to tell parents of children with the same disability as me that they need to talk about it, and doing so in a way such as saying "Yes, you may have problems with this, but you can still do this, this, and this, and everyone has something wrong with them anyway" from the beginning when the child is young can go a long way toward emotional health later.
So, I found myself thinking all of this when I realized this boy's parents had told him nothing (not even the name of the disorder). But then I thought, what if it's not the same? Perhaps he would not try/give up in school if he knew, and perhaps he doesn't need to know. The parents don't want him to be labeled or feel that he has something "wrong" with him (which bothers me, because they sit there basically telling me how it would be the "end of the world" for their son to be seen by others as having a disability...and I have a disability!) The real problem in my view is the parents' view of disabilities, and as their son will most likely discover the truth anyway, I fear it will be almost inevitable for him to experience the same feelings I mentioned above.
If none of this is making any sense, I'm wondering how other parents deal with explaining their child's differences. Do you understand my view, or do you identify more with the parents' reasoning? I would appreciate any personal experiences. I will be working with persons with disabilities and will most likely experience this again. I want to be able to look at things from others' point of view in situations with which I may not quite be able to relate (i.e., not visible disabilities).
Thanks, sorry so long.
Last edited by Steffers2318; 03-15-2007 at 08:23 PM.
Well, on the one hand, if he knew, his parents might think he'd use it as an excuse (such as for not doing well in school).
On the other hand, he's 15. He's going to be an adult soon, and he has every right to know. It might also make him feel reassured that he's not some "freak". What if he's heard whispering at school? What if he just doesn't fit in? If he knew there was a name for what was going on with him, it might be an "ah-ha!" moment for him.
My son is only 3 1/2, and there is no need to tell him he has Autism. I don't feel that he would understand what that meant, and he probably doesn't see himself as different, because he attends a school with other special needs children. At some point, we will address the issue. I'm not sure when or how, but I can't see not telling him. That seems wrong to me.
Yes, I guess the idea of "when or how" to tell is what I'm having trouble wrapping my head around also. I see what you mean about your son not needing to know at three, but then where should you draw the line? I guess because not knowing was not an option for me, I don't know what if any advice to give.
not only have i never mentioned anything to my asd son about him being "different", but my other children don't know. i have thought about when the right time would be to approach the talk with his older brother (ten yrs old) but haven't yet felt it necessary. besides, my asd son doesn't know he is any different. he has friends, likes school and enjoys so many "typical" activities. so big deal, my kindergartener wants to discuss the rain forest and explain to me why each animal does or doesn't belong there. he also decided last week that since i can't teach him spanish (we are a bilingual household but spanish is not one of the languages we speak) he was going to teach himself and now plays some of his computer games in spanish and does pretty well. when he asks, i will tell him but for now he is a very happy, confident 6 year old.
For us, with four children having disabilities and my husband who is an Aspie, telling the kids isn't even an issue. We are really open with the kids. They know what days they have therapy and why they go to therapy. For instance, our 6 year old has had speech therapy since he was 2. He also has auditory processing problems and poor expression of speech, and right now he's fine with therapy and works hard at it. He doesn't seem to be bothered by it--of course he's only 6. Our 7 year old with PDD-NOS on the other hand, is very opposite from our 6 year old and he gets frustrated with his weaknesses. He said the other day, "Mom, when I get grown up will I still have PDD-NOS?" He'll also complain about therapy, too. Our 3 year old boy with autism cannot verbalize his feelings, but he is a happy boy. Our 11 year old daughter gets frustrated with her CAPD and ADHD and one thing we teach her is to not use it as an excuse.
For me, I realized that fighting the system was doing us more damage than good. Since we've received the diagnoses, we have gained more knowledge about ourselves and our weaknesses and hope that one day they will be turned into strengths. I hope this made sense. I applaud your willingness to help others.
My husband found out when he was 21 that his older sister was really his mother, and his parents were really his grandparents. Needless to say, this information was devastating to him and it destroyed his relationship with his family. He felt like his whole life was a lie and a sham, and worse yet, he felt like a fool because everyone around him knew all along the circumstances of his birth while he did not.
Keeping secrets about major life defining issues while may be well intentioned is never a good idea in my opinion. We have been open and honest with both our boys regarding their diagnoses since before they were even able to understand the implications of it. We talk about autism and asperger's as matter of factly as we might talk about the color of their hair or their shoe size. We don't make a big deal about it, we don't allow it to be an excuse, but we don't hide it or pretend it doesn't exist. I can imagine a child who this information was hidden from growing up someday and finding a copy of a childhood evaluation among family papers (much as my husband discovered his birth certificate) and him feeling just as betrayed as my husband felt when he discovered the truth about his birth. I try to handle the subject with my kids much in the same way experts suggest questions about the birds and the bees should be handled. I just give the kids the information that is needed at the time and I don't go overboard. My 9 year old knows he has autism and that its the autism that makes speech hard for him. My 18 year old knows he has asperger's and due to his age understands much more about it. I left a note for him to do some work around the house the other day while I went to work. He initially got very angry at me as he interpreted my tone in the note as being too harsh. Later, he came to me and apologized for his reaction saying that he realized due to his asperger's he had misunderstood my tone! I think understanding his condition allowed him to realize his mistake and take responsibility for it. I was really proud of him!
Ehlers-Danlos Syndrome Type 3
Severe DDD with multiple herniations and areas of stenosis, 16 affected disks!
C4-5 ACDF 2006
C3-6 ACDF 2013
Chronic Myofaschial Pain Syndrome
I just wanted to add that my husband always knew he was different and wondered why he failed at so many things in life. His parents wondered too, but didn't do anything about it. Now, having received the diagnosis--it all makes sense to his parents, me, and especially himself. It has given him a "fresh" start at life.
Keeping secrets about major life defining issues while may be well intentioned is never a good idea in my opinion. We have been open and honest with both our boys regarding their diagnoses since before they were even able to understand the implications of it. We talk about autism and asperger's as matter of factly as we might talk about the color of their hair or their shoe size. We don't make a big deal about it, we don't allow it to be an excuse, but we don't hide it or pretend it doesn't exist.
What you said is exactly how I feel disabilities should be handled. The disability is not going to go away so why not just face/address it and teach your kids to make the best of it? I think, in the case of the people I know, they have not come to terms with the disability and are hoping it will be "cured" and/or just go away. I can understand this, since no one is prepared for or expecting their ideal of having "perfect" children to be taken away from them, but at the same time I think people just need to get over it (or at least ATTEMPT to get over it by forcing yourself to look at and talk about the bright side). My parents never told me anything so I ended up researching things myself, and then going to them and saying "Did you know ...", forcing them to tallk about it. So there.
I think I am just going to leave the people I know alone since what they tell their son is ultimately their decision, but in the future when I have a more directly involved professional role maybe I'll just stick to mentioning my personal experiences.
Thanks to everyone else who replied as well!
Last edited by Steffers2318; 03-18-2007 at 04:06 PM.
I have another little story to add to this topic. My mother has managed a small business for over 30 years and the owners of this business have become just like a second family to us. One of the owners has a grandson who is obviously on the Autism Spectrum. In fact he has been tested and the diagnosis has been confirmed. Knowing that my mother has 2 grandchildren on the spectrum, the owner's son has confided to my mother his own son's diagnosis, yet he has never told his own mother about his son's condition! When my mother asks him why he doesn't share that information with his own mother he replies "if she cared about my son she would ask what is wrong with him!" On the flip side, the owner confides to my mother how much she worries about her grandson yet she doesn't feel like its her place to say anything to her son about her concerns. She feels that if there really was anything different about her grandson she thinks her son would surely tell her about it, so she feels as if she worries needlessly! And then here is my poor mother caught in the middle of this and doing her best to not break the confidences bestowed on her by both parties!
The moral to this little story is really the same as my previous story, and that is the secrets we think we keep are often not quite as secret as we might like to believe. By not talking about them we don't change anything, we just cut ourselves and our children off from potential sources of support and teach them that there is something so wrong that is too shameful to discuss, even among family! While I don't advocate jumping right out with the big "A" word the moment you meet someone new as its overwhelming to someone new in your life. I think its best to give them some time to get to know you and your child first, and then offer additional information as its needed. I do advocate openness and honesty among family, friends, and the affected individuals. For how can the affected individual learn to love and accept themselves when the significant people in their lives can't seem to openly accept them for the unique person they are? Admitting to your child that they have an autism spectrum disorder doesn't make it any more or less true, it just sets everyone in the family up to better manage and cope with the situation, particularly the affected child. I think we can all agree we want to give our children the tools they need to cope with their lives to the best of their abilities. Honesty and acceptance are two of the most important tools we have available to give!
Ehlers-Danlos Syndrome Type 3
Severe DDD with multiple herniations and areas of stenosis, 16 affected disks!
C4-5 ACDF 2006
C3-6 ACDF 2013
Chronic Myofaschial Pain Syndrome
That just seems crazy. Perhaps your mother could give "advice" without outright telling each what the other said. For example, she could tell the mother, "I'm sure your son wouldn't mind you asking in the right way"...perhaps tell her to say that she noticed the grandson always does ____ and ask if he does that at home/school as well. Or "perhaps your son doesn't notice or realize anything is different and he would appreciate you pointing something out." Or to the son "maybe your mother feels you'd get upset or it's not her place." If your mom does not want to do either she could at least be honest and say that telling the other would give the child another supportive person, as you said!
I can understand the mother's position more than the son's, though.
Last edited by Steffers2318; 03-19-2007 at 11:58 AM.
My son is 16 yo, w/PDD-NOS & many autistic traits. We have spoken of his diagnoses all along. Not to exclude him -- there is a genetic predisposition with the spectrum. Our child is very much a part of "us."
In working with an older teen, like the 15 yo friend, co-operation is needed. A younger child can sometimes be bribed, but an older teen usually needs a reason for participation in treatment, whether that be conventional medication, or biomedical intervention.
My son, and most kids his age on the upper end of the spectrum are too smart for any of this to be a "secret" to them. Of course, how far afield the family goes in publishing the diagnosis can be a big issue with teens. Discussions with the child -- and with others who are "not involved" are both huge areas where respect for the individual needs to be demonstrated. IMO, not including the child in the discussion is very disrespectful as well as unhelpful to the child's long term development. Having said this, of course there is a time & a place for those discussions. A lot depends on the child's ability to comprehend, as well.
Coming to terms with who we are is a big part of growing up. For all of us. For my son, there was a time when he was accepting of his dx & co-operative. At present he is in a state of denial. But this is part of the process, part of the working-through. However, the sooner an older child/teen has the information, the sooner the process can begin.
One final comment: I believe it is important that all conversations with kids on the spectrum be done with a great deal of encouragement. These talks should not be done to exclude our kids, knock them back, "teach them a lesson." There is so much research that is being done, many breakthroughs on the horizon. Those who sign on soonest may be first in line for what science has to offer.
This is a tough one, isn't it? I guess as parents our main desire is for our kids to be happy and who knows whether they'll be happier KNOWING that they may be on the spectrum or happier just living their lives and accepting their 'quirks'. I was born very prem 38 years ago and as a result had some developmental delays - was slow to walk and talk and have poor spatial awareness. Turn me around twice and I'm lost. I suspect that I may be on the spectrum somewhere, but I've never sought an official diagnosis. I also have one lazy eye (used to be a squint until it was fixed at 17) which made sport a nightmare because I could never hit the ball. There is part of me that wishes my parents had made the school aware of my eye issues so that I had the choice of whether to play these sports or not because sport was terribly humiliating and ripped my self esteem to shreds. But my parents are the last people who'd want to admit I had any sort of 'disability' so i've spent my life feeling like I'm floundering. A lot of things in life have been very hard for me. (Sorry for the woe-is-me - lol!!) And I wonder if that's because I have an undiagnosed aspect of autism. Some of me feels angry that my parents didn't seek help or accept my issues, accept me as I was and love me unconditionally. But I feel like i've been falling over, again and again in the course of my life, and I just get up and keep going. I don't know, in retrospect, whether I would prefer to have known about my condition early on, or not. Maybe it would have stopped me doing things I really enjoyed, like going to university and living in college (which was great fun!) or getting married and having children. My children are fine. Any problems I have are obviously due to my prematurity.
Sorry, I realise this is a bit of a ramble, but just thought I'd add my thoughts.
So - in response to 'tell or not to tell' - I don't know?? There's arguments for both I guess.
Well, I'm 33 now and got diagnosed in my late twenties. I would much rather have known sooner. I just used to think I was schizophrenic or something. It was a lot of confusion. In the old days, a lot of people with mild Autism were probably just dismissed as quiet, a bit withdrawn or shy. These days, it's sort of different. As far as I'm concerned, 'knowledge is power'. I now know that I'm not alone with my condition and have been able to find resources and support to help me deal with it. It's something I feel quite strongly about. I agree though that it probably takes a certain amount of maturity to deal with the information, to be able to understand it. Kids with Autism can mature intellectually faster than emotionally, but the emotional side also needs to be dealt with.
A problem with trying to explain Autism to a young person is that when you see it on TV, it is usually the more severe cases - that's what a lot of people connect with. It's important to explain that Autism can present differently with different people. No two are the same.
We have just learned our 8 year old son has Asperger's, it was a relief to get this info, he has always had "querks", but doesnt everyone? He is our son, and we thought he would just grow out of it, any way he is a literal thinker, and gets worried over very small things, and I am worried if I tell him he has Aspergers what he will think of himself, and how much more worry it will cause him. On the other hand, he has so many social problems, the kids at school, I wonder if this knowledge will help him? My husband does not want to tell him, but I am reading a book from a boy who really wished his parents had told him. I want to do what will help him the most, he has overcome alot of the things that set him apart, and I wonder if knowing will prevent him from continuing to progress. This is a really hard decision, I accept him like he is, but society isnt to understanding. If you have an insite to my dilema please share it with me.
Rach, this problem is tough, and I don't blame you for not really knowing what to do. That's what this whole thread is about, isn't it?...so you are not alone in being confused!
As a person with a disability (not Autism), I would say tell him. Reason being, even if you don't tell him, he will still have those "quirks" that make him different, right? And people may still judge him because of this, instead of judging the label "Asperger's". But if you tell him, maybe it will be a relief to know there is a reason for the quirks.
Even if it is not a relief and he becomes uncomfortable about being set apart, he needs to deal with this eventually because it is part of who he is. If you tell him in such a way that you communicate that it does not matter, (meaning, tell him how relieved you were to find out and say "but it doesn't really matter, does it? You're still you!"), eventually this will sink in and he will be much better off for it. Everyone has confidence issues at some point in their lives and yes knowing something's "wrong" with you can make this harder, but delaying him finding out isn't going to make this go away.