To Tell or Not to Tell...

Post Reply New Topic

I am sincerely hoping that those of you with AS can help me get some insight regarding this question. This question may have already been posted but I didn't find it.

I am NT. My husband is NT. We have a 16 yr. old son who is NT and a soon-to-be 8 yr. old son who has been diagnosed with Asperger's. Our son with AS was diagnosed in January 2005. We haven't told him yet. The only time he ever once came close to even asking us a question related to his diagnosis was, "Why do I have to take these pills?" and we told him so that he could focus better in school and to help him control his behaivor better.

My question is do we tell him about his AS diagnosis or not and when? I am hoping that those of you with dxs will be able to give me some insight from your own experiences and perspective. He has never made any comments or had questions regarding his behavior compared to other people and we've really been waiting for him to do that as our guideline about when to tell him, but I don't know if that's ever going to happen.

Any input would be much appreciated. Thanks in advance!

I would say at 8 he's a bit too young to understand. Wait till he's older, then tell him. Or if he asks, then would be a good time to tell him.

I think he could handle an "age appropriate" explanation.

I don't understand why taking pills helps aspergers. Maybe he has other dx as well?

But I'm pretty sure that aspergers benefit from detailed explanations. Try to use words that he'd understand. He will probably also want to do his own research. You would also need to explain that he shouldn't be telling anyone else that he has aspergers (or other dx) without checking with you first because some people in the world are nasty about it.

You may also be able to explain that some of his sensitivities are related to the aspergers - and he may be annoyed by things that other people don't notice, and you can then tell him little role play stories or parables on how to handle these situations.

I think that is the main thing about aspergers - NTs just "know" how to behave in certain situations, aspergers kids have to be told in detail what needs doing and why. And if you miss anything out or get too metaphorical - they may misunderstand or take what you say literally. And this may seem like a "smart alec" reaction. For instance if he's told he needs to pull up his socks in English class - he make take that literally and pull his socks up - the ones in his shoes - in English class.

I think the kid deserves to know.

I grew up without a diagnosis - when I was eight AS hadn't been defined yet, and I had to wait till I was an adult to find my own answers. If he's Aspie, he's probably bright enough to have already worked out that something is going on. Particularly if the rest of you are NT.

Being isolated from other kids your age is one of the most difficult things a child can go through. If they don't even know the reasons why, then they're even worse off. You can't fight something or work to understand something if people are keeping it a secret from you.

I also think pills are a bad idea. If you forgive my bluntness, there is no cure for AS and you have to remember that we - as Aspies - build our lives and strategies around habits and patterns and the things we do every day. If your son gets used to taking pills every day, he may then form the pattern of thinking it's okay to take pills and therefore be at greater risk later on. Also, the benefits of medication for AS kids (as opposed to other family members and the pressure ON them) are dubious and inconsistant. Your son needs to learn how to work around his AS, and he can't do that if it's being drugged all the time.

AS is for life and medication can and does have side effects. Much better to talk to him and to your doctor about some kind of other therapy - where he can learn strategies for dealing with people and situations.

I'm Aspie and I'm twenty four - I've never been medicated. I work in the public sector and am around strangers every single day I work, helping them with enquiries or problems and meeting people from all walks of life. One of the things I'm often told is how good I am with the public. But all I've done is stop and watch other people, learn techniques, habits, gestures, facial expressions, common topics of conversation until they're a natural part of my own outward behaviour. I love my job and even though I know I'm not 'perfect', I feel that every day I'm here I'm improving my social skills more and more.

I know you love your son and you would never do anything to hurt him. I just think - looking at it from an Aspie perspective - drugs can do more harm than good and are not a realistic long term thing. It really depends if you want your son to have any chance of being independant when he grows up. He'll only do that by learning the life strategies - not by taking medication. Even though it's tough for us, Aspies need to be around people in order to learn how they work. You can't learn anything from taking pills.

I want to recommend a book I glanced at recently -

http://www.amazon.com/gp/product/1843102064/sr=8-3/qid=1147354586/ref=pd_bbs_3/102-7066628-5533721?%5Fencoding=UTF8

There's the link to it at Amazon etc It might be just what you - and he - needs to really understand what's going on for all of you!

Apple

Yes, he was initially given a diagnosis of depression at the age of 4 which we didn't agree with. At age 5 he was dx'd with ADHD but his Dad, myself and his Developmental Kindergarten teacher all felt that there was something more going on due to his rolling around on the floor during high stress times, banging his head against walls, overly sensitive sense of smell, violent meltdowns and other behaviors.

We eventually were told he had mild Tourette's (sp?!) which caused his tics (both motor and verbal). At that same time, he was also dx'd with sleep disorder and anxiety. We just felt like there had to be a more accurate dx that encompassed all of his other dxs.

His Dev. K teacher said she really felt like he had Asperger's. Up to this point, we were just treating his various "symptoms"/dxs with meds (for the tics, sleep disorder, anxiety and ADHD). He was also receiving OT (because his therapist said he had Sensory Integration Dysfunction) and speech therapy (because he took everything so literally like you were talking about and he seemed to have a hard time communicating in general). We were also working with a family counselor to help us better understand how to help him in social situations thru behavior modifications, role playing and role modeling.

He was 6 when he was finally dx'd with AS. What we were told was that there is no specific medicine for AS itself but what we were already doing (which was treating all of the symptoms of the other dxs), if it was helping, we should continue. We were also encouraged to continue with what we were learning in counseling and with the OT and ST.

Thanks to both of you for your input. I really appreciate it. We just want to do what's best for him and getting the perspective of people with AS is helpful. He's a really neat kid with a very unique sense of humor that we all enjoy. We really do feel blessed to have him as our son. Thanks again!

i'm 16. i found out partly on my own recently, then when asking a counseller i use to see about it he confirmed it. If somone had told me what it was they were all talking about and why people kept asking me all thease questions and why this person kept following me in school i would have been far more inclined to actully have learnt somting, and i feel this would have helped enomasly.

however, my story is a little bit more complicated because i am in fostercare....

but anyway i hope that helps.

jammie

Thank you apple! We agree and medicine was really our last resort to keep him from hurting himself and others (he was very, very violent when he was younger but it is getting better as he is getting older). Before any dx was made for him, we had actually done $3000 worth of lab testing to make sure he wasn't having some sort of allergic reaction to something that could be addressed thru something like a simple change of diet. My husband is a supervisor in our local hospital's lab so we went that route first.

We totally agree that medicine is not the answer (especially not long term) and that's why we do all of the behavior mods, OT and ST as well. We hope to eventually wean him off of the medicines which we are currently working on along with the child psych, one at a time. Unfortunately, without medicine he doesn't sleep. He can stay up 18 hours straight, sleep for three, then get right back up for another 18 hours. Once we started the sleeping medication, his waking hours were much more tolerable for him and us. We have actually tried school several times (sometimes unintentionally) without his ADHD medicine and his day always goes very badly. His teacher will call and ask if we forgot to give him his med. When he gets home from school after a day without it, he's horribly out of sorts. We tried backing off on his med for his anxiety but when we did, he started refusing to go to the bathroom at school and would have accidents. He actually even started refusing to go to the bathroom at home as well without someone going with him. Before he was on meds for his tics, whenever he was in a high stress situation (whether good or bad stress), his tics would be so bad he couldn't participate in simple activities like Kindergarten graduation without his body and head jerking violently. Made me cry...

Oh, I so hate having him on any medication but I have seen the difference it's made in the quality of his day. Our hope and prayer is to have him off of all the meds eventually which, like I said, is what we are currently working on. I do believe we're getting closer to that goal as he continues to mature. He's done so much better in school this year and he is in a mainstream 1st grade class (he repeated K so he went thru that twice) with support through a special ed social skills class every day for an hour or more as needed. During the summer, we do take him off of the ADHD medicine because he's at home with us in a controlled and relaxed enviornment. The times that are the worst for him seem to be when we are at a large social gathering like at church, family reunions, etc.).

Thanks again apple and I appreciate the info on the book!

God bless you guys!

Tell him as soon as you are able to explain it to him in a way which he understands. Don't be concerned about hurting his feelings, he's better off knowing. Also, get him to the nearest treatment place for autism after you explain it to him.

A diagnosis of ADHD seems to be somewhat common in regards to AS during the younger years. Whether or not the hyperactivity should be treated alone or is related to AS is hard to tell, though the two together generally produce extreme impulsivity and a wide range of emotional difficulties.

I was placed on Ritalin, and it made the behaviors even worse. I was taken off, and the violent behaviors began to subside. I am quite fearful of using medications with many psychiatric disorders, not just AS and ADHD. I believe that alternative therapies should be tried first, that is unless there is such a distortion of reality or behavior that the person literally function appropriately.

I would tell the child. He needs to know. If he starts having problems at school in maintaining friendships and so forth, he's either going to hold the tension in until he explodes one day or he's going to start asking questions. If you or others deny him the truth, he's going to believe you, for the most part. He's going to want to know why he can't fit in appopriately, and telling him then may be very hard for him to accept. If you tell him now, before he starts having social problems, he will be prepared for it.

- Ray M -

I would say tell him, but make sure you do so in a positive way. Don't neglect to tell him the bad bits as well, athough for obvious reasons they shouldn't be the focus. If you dwell on the bad he may start seeing AS as a crutch that he can use to excuse himself for all sorts of bad behaviours, if he becomes so inclined later on down the track.

If you are having doubts about whether the advice you are being given here is good advice, then think a few years ahead when his troubles start to accumulate if they haven't already done so. Anything that you tell him about AS is going to be negative to him then, no matter how you put it to him. It will be seen as the cause of all his problems, whereas if you tell him now he might be able to see AS as neither all good or all bad.

I think the last poster made some really good points. We told our son about his Aspergers diagnosis just this year when he was eight and a half. We had to, because he was starting to become aware of differences between him and other kids. He took it really well. The trick is probably knowing how much detail to include. Our son knows that his brain is wired differently than most people, and that it gives him advantages and disadvantages. He keeps forgetting the term Aspergers. He even called it Al's Burgers once.

kindsfater

That's a relief to know that the pills are for treating all the associated symptoms and related problems. So you can explain what each pill is for. And as he learns more social skills and strategies for "decompression" or acceptable ways to deal with his frustrations and tensions, hopefully you will be able to stop maybe the meds for depression and anxiety and maybe even the sleep problems. For me, learning meditation helped. I was never on medication though. It will also help if he knows why he needs to put up with silly rules and foolish people. For example, if he can get through this boring lesson without causing trouble he can be rewarded with more time for interesting things - whatever they may be.

If the aspie kid is stuck in a lesson/activity he feels is pointless or boring, the outcome may look like ADHD. If the lesson is interesting the concentration can be intense - which an ADHD kid probably couldn't do even if he or she wanted to. I had a million devious strategies for getting through boring pointless lessons without disrupting them. I'd read an interesting book inside a text book or I'd do the homework for some other class. If the teacher asked me a question - I'd pretend I didn't hear it properly and ask her to repeat it - and then I'd be able to answer it whether I'd been paying attention or not.

The other thing I can recommend for the extreme anger and frustration - is some displacement activity that is very physical and energetic. Examples - digging ditches (Monty Roberts' foster kids), bashing bricks and chopping firewood (my brother), punching bag (my lawyer friend), hockey, bike rides and hiking or long walks (me). It doesn't really matter if he's any good at it or co-ordinated - I think the trick is to get the blood pumping, release endorphins and adrenaline so he feels better and can calm down. At school, that might require laps around the playing fields. Lunch time sport might also work. But equally, the library could a good place to indulge special interests and be in a quiet calm space.

As far as communication skills go - books of quotes and english idioms may help. I liked books of jokes (funny and peculiar), and I liked the dictionary and encyclopaedias. The internet itself as a communication tool may also help. If your son has any special interests, he can join a club either locally or on the internet to learn more about them and the interaction with like minded people will help him develop socially. Don't feel he is too young for this. The way aspies often communicate works better with older people than kids his own age anyway.

For the family events - they can be torture - but chances are there would be more aspies in your family that he might get along with - look for family members who have an intense passion and like to teach others about it. Otherwise, you may have to let him bring a book or toy that interests him as well. He is probably old enough to contribute his own ideas about this. And he's probably old enough to make bargains with you - if I'm good at this event you will take me to something that interests me...

Aspie kids are our future scientists, engineers, architects, artists, musicians, academics, doctors and more. And I like what greendeltatke said about the aspie brain being wired differently and gaining advantages and disavantages because of it.

I haveta say you sound like a family who's doing everything you can for your son In a world that's still *very* aspie ignorant, that's really neat to see

I wonder if the reason his behaviour is worse off the medication is simply because his system adjusts to having the medication. It's like with any drug - this is a bad comparison, I realise, but people who use amphetamine regularly wind up having their brain systems change and slow to compensate - and the reverse with those who use depressant drugs long term. That is one reason why they find it so hard to come off them - it's not about want but about a physical dependancy/change in metabolism that's harder to undo than it is to create. Since we don't wholly know what the Aspie brain is like, it seems a roulette game with your son's long term happiness.

What helps in the short term may not in the long :S And may actually antagonise his symptoms as his brain tries to compensate for what's being suppressed.

I'm really glad you're working with him on other things as well. He's a lucky kid he has a supportive family

I hope the book helps Even though it's aimed at 7 - 15 year olds I've found it one of the clearest descriptions of AS of all the reading I've done.

Apple

If I had known, there would have been a lot in my life that would have been changed for the better.
Besides, I can't see why taking pills would help. He will not grow up to a healthy person if he's drugged up all the time.
It's better to teach the kids how to deal with the world than to sedate them. You have to be open with him, or he might feel betrayed.

Hey, thanks everyone for the great input and advice! What a blessing! I will certainly take all of your opinions into consideration and share them with my husband.

As for the medicine, like I mentioned before, it was our LAST resort but due to the very, very violent behavior he was exhibiting at the time it was a necessary evil. It was very effective in helping him sleep, focus and gain control over his violent behavior and tics. The medicine was necessary to get him in control of himself enough to learn the behaivor mods which teach more appropriate responses and behaviors. We once visited my husband's family in another state and his sister and bro-in-law made the observation that our son wasn't any different from their three boys around his age. We said, "Yes, that's right...but this is him on his medicine. Imagine the energy level, aggression and anxiety levels increased by about 10 times that much and that's him without his meds."

Like I mentioned before, we are in the process of weaning him off of the meds but it takes time...you can't just cold turkey them off the meds, that can be dangerous. We have looked at alternative therapies (chelation for example) but unfortunately, in the US, these are not covered by insurance and as a one income family we cannot afford them right now. We are currently looking into a diet change that we've heard about from other parents of AS children who have seen some positive results.

Apple and woe, thanks for recognizing that we are doing the best we can for our son...I really appreciate it. Between the folks who think our son is just spoiled and needs a good spanking and those who think medicines and psychiatrists, therapist and counselors are just bunk, we can get pretty discouraged sometimes. We have seen the difference all of the extra work, effort, time and meds have made in the quality of our son's life and we are thankful. We know as he matures and is able to learn coping methods that work best for him, the meds will become history.

If you guys are praying people, please say a prayer for us! Thanks and God bless you all!

Welcome and good luck

AS is less scary the more you learn about it. That goes for all of us - I'm still finding out bits and pieces which have made things fall into place. When I was a kid - not knowing I was Aspie - I thought I must just be a really horrible person or a complete failure. Other kids would call me stuck up or whatever...and there were so many things I just didn't *get*. I really believe your son needs to be armed with all the knowledge he can get to deal with his AS. So long as he doesn't feel it's a disability in the sense that it makes him less than other people. I usually tell folk that my brain wasn't programmed for this world, that's all

I'm posting again because you mentioned the diet. My mother and I were discussing this the other day and we both think my behaviour improved a whole lot when my dad was forced to go on a low cholesterol diet. We all ate much more healthily and we're sure there was a connection. I haven't gone all GFCF yet - that's kinda extreme - but I think it does help.

Lots and lots of luck with your kid. As I said before, the fact you guys are so interested in finding all this stuff out makes him a lucky boy

Apple