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To Tell the Truth - Asperger Mom
Posted on Tuesday, March 01 @ 09:53:30 EST by | 
Joanne Houldsworth is the parent columnist for WrongPlanet.net. She covers autism through the perspective of a mother of a young son with Aspergers Syndrome. She writes a weekly blog, entitled Aspergers: A Mom’s Eye View, where this article was originally posted.
“Greg, the doctor has discovered that your brain does not work the same as most people’s…” That is how the discussion with my 8-year-old started…
There is much debate about the age at which your child is ready to learn of his diagnosis. After all, you want your child to have good self-esteem and a carefree childhood; why worry him already? Since every situation is unique, there is no ‘correct’ answer to this valid concern. But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…
If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability. You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.
For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically. I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay. I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?
But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’. He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics]. And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation, “You know Mom, I’m not like other kids.” Pressed for more, he responded, “We just don’t think the same.” But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me! I just can’t….can’t….can’t help it!”
In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd. But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.
So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news. I first shared the diagnosis, along with some educational material, with our family and a few close friends. I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory. I also knew that Barry and I could definitely use the emotional support of our relatives and friends!
After thinking long and hard about it, I also shared the news with Gregory. Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information comforting, rather than disturbing. I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS. So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:
“Gregory, you know how we’ve been taking you to lots of different doctors lately? Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.” Greg looked shocked, but since I was calmly smiling, he was open to hearing more. “That is good news and bad news,” I said. “The good news is that one part of your brain is really, really smart. The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.” Gregory nodded his head, acknowledging these troubles. “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.” Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile! Phew!!! I then presented him with a cute little book for kids, entitled “Can I tell you about Asperger Syndrome?” so he could learn more about the disorder.
To be perfectly clear here, most people do NOT have this discussion with their young kids. I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability. But I am convinced that it was the right thing to do for us. Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through. It validated his feelings and provided him exclusive membership in a special group of people. And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor. Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors. We no longer heard the distraught, “I can’t….can’t….can’t help it!”
Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress. We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together. And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited. Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.
Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially. That acceptance, along with numerous programs, has enabled Gregory to grow into himself. He is now relaxed and happy – most of the time! He is a beautiful, bright, talented, funny 10-year-old boy. And oh yeah, he also happens to have Aspergers Syndrome.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by dawsonsmom Wednesday, March 09 @ 01:49:41 EST
(User Info | Send a Message) | | I am new to the website and happy to have found it!
I too am a parent of a 10 year old boy with AS. My son was diagnosed at the age of 7 after many frustrating and difficult years. We live in a rural area in Washington state and have very little resources. Our pediatrician kept telling us he had ADD and when nothing he suggested helped our son he said to me "I can't help you". It was sooooo frustrating! We were finally given a name of a psychiatrist in Seattle who treated children on the spectrum ( that is 3 hours travel time for us). Once we got an actual diagnosis many more doors opened up at his school now that he qualified for an IEP. He is in the 4th grade and really struggling with making and keeping friends. I loved the reference to the book you made because just last week I gave this book to my son for us to read together. When he finished reading it he asked if he could take it to school and show his teacher. He said " Maybe kids will understand me better now ". It has been heartbreaking to hear him come home from school and tell us that "so and so" doesn't want to be his friend anymore and that nobody likes him. I am really hoping that with more knowledge of AS he won't feel so alone and different.
Thank you for sharing your story!
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Braydensmom Wednesday, March 09 @ 17:04:40 EST
(User Info | Send a Message) | | I sure wish I had read this back a year and a half ago when I struggled with the same debate. I didn't explain it to my son as you did and that may be why he really didn't understand. I think when the time is right I will try the good news / bad news approach. He does think there is something wrong in his brain so asking him if he wants to use the really smart side to help his other side, he may get on board with that. He is eleven now and more aware that he is not typical. It breaks my heart that he doesn't understand. I reinforce to him how special he is and what a caring warmhearted person I see in him. Thanks for sharing your story. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Marcia Wednesday, March 02 @ 18:08:08 EST
(User Info | Send a Message) | | My son was diagnosed when he was 7 years old and I told him about it when it came up naturally in conversation a few months later. He already knew he was different and knowing that he has Asperger's has been very helpful for him.
Quite apart from the whole issue of being open and honest with your child, and discussing things with them, I don't know how parents could keep something like this from a child who (like my son) has many different appointments and sessions with Speech and Language Therapists and Occupational Therapists. How do they explain away all this extra attention from professionals which most children don't get? That just confuses me. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by aussiebloke Wednesday, March 02 @ 19:00:32 EST
(User Info | Send a Message) | | I really really don't understand how a parent can not disclose the diagnosis to the child, not knowing what I had / was their a name for my differences, exasperated my severe co morbid anxiety issues.
I had it worked out age 5 , also I instinctively knew I would be annihilated when I started public schooling and I was .... |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by so_subtly_strange Thursday, March 03 @ 12:29:41 EST
(User Info | Send a Message) | | My parents never spoke with me about the informal diagnosis several of my grade school teachers approached them with. Im relatively certain they never took the issue to doctors for a formal diagnosis. I have only within the last few months made the discovery for myself. Im however not bitter, my journey is my identity. But would never wish it upon another soul to have suffered through adolescence without any explanation of the context of their illness. Which is not to say i see Autism as an illness, absolutely the opposite, however it was very much a hinderance to me to have no idea that their was a specific reason for my struggles, and that they were absolutely normal for the sort of person i as (AS/HFA). I feel like i could have done so much more with my life if i knew about this part of my identity much earlier. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by j0sh Thursday, March 03 @ 14:52:26 EST
(User Info | Send a Message) | | Way to Go! You sound like a great mom!
I really wish I knew sooner too.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Ria1989 Saturday, March 05 @ 22:51:51 EST
(User Info | Send a Message) | | Wow. You are one wonderful woman for doing that. I don't think you could have approached it and explained it to your son any better than you did! |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Awiddershinlife Tuesday, March 01 @ 15:30:37 EST
(User Info | Send a Message) | | Its not that I reject the perspectives of non-spectrum people - its just that you refuse to welcome the perspective of spectrum people at all.
There is a plethora of "experts" writing and lecturing on autism. It is a rare person with autism that is respected as a source of information.
Please feature a varety of people on the spectrum. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by kfisherx Tuesday, March 01 @ 19:49:25 EST
(User Info | Send a Message) http://asdculture.wikispaces.com/ | | I LOVE this article and have to agree 100% with it. I also love the book you reference and even hand it to my adult friends as a "guide" for what Aspergers is. :)
Nicely done and many happy years with your son! |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Ksiusia Tuesday, March 01 @ 20:45:10 EST
(User Info | Send a Message) | | I didn't know that most parents don't tell their kids about their diagnoses--I'm shocked, actually. How is the kid supposed to deal if s/he doesn't know what s/he's dealing with? |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by CockneyRebel Wednesday, March 02 @ 07:48:52 EST
(User Info | Send a Message | Journal) | | I wish that I would have known a lot sooner. I was told when I was 15 and I feel that's way too late. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by rondeau Wednesday, March 02 @ 11:32:06 EST
(User Info | Send a Message) | | Quite frankly, memories of my first thoughts were about how very different my thinking was from the others. In my life, there is no option to keep something a secret. Stuff behind closed doors has a tendency to fester and morph into something unmanageable. I have always been the proponent of open discussion about all things. Glad to hear that it benefited another Aspie. Oh, there was a study of two groups of young people having difficulty in school. One they applied the traditional best study practices class, and the other, they taught them about their brain…guess which group’s grades went up? |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by jjtakala Friday, March 11 @ 20:58:53 EST
(User Info | Send a Message) | | I ended most of my problems when I went with a natural and, or organic diet and lifestyle.
I think I discovered the cause of Autism.
It's the preservative that is in virtually every household, restaurant and grocery store across America and quite a few other countries!
It's called Calcium Disodium EDTA, It's in most mayonnaise and margarine. The DOW Chemical Company states that they make EDTA from Formaldehyde and Sodium Cyanide.
When I ate any artificial additives it caused a migraine headache which lead me to understanding that when I got a migraine headache it was in fact my brain stem had swollen.
When the brain stem swells it causes a physical fluid pressure increase within the skull resulting in disorders like my bipolar manic disorder that disappeared when I changed my diet.
I felt my eyes being pushed from their sockets, my ear ringing (tinitis) and severe pain at the base of my skull at the back of my head!
Autism occurs when a pregnant woman consumes any of the artificial additives that caused my migraines, In the womb the unborn child succumbs to the pressure increase and the brain suffers an arrested development.
I didn't know anything about this stuff until 2006.
I am now 49 and the bipolar manic disorder is gone, The Aspergers syndrome that helped me to have the intelligence to decipher the series of events that lead me to these conclusions.
An autistic child, or adult can improve their condition by adopting the same natural and organic lifestyle with regards to anything you put in, or on your body!
I am Jorma J. Takala
Find me on facebook, My info page and my notes contain links and informtion about my discovery.
I really did discover the cause of Autism, I have spent the past 5 years trying to share this discovery, But sadly no one takes me seriously.
The cause of autism is EDTA and the additives that we all consume everyday, maintain the autistic state!
That can change, it's hard work, I did it, So can you! |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by irishwhistle Friday, March 11 @ 01:50:40 EST
(User Info | Send a Message | Journal) | | I dunno... it was all handled very nicely, but where is the line? Why do we have to have a doctor's note and the condescension of all the "normal" people to be allowed to think differently? How many people seek diagnosis because kids are taught to accept differences they can see and are allowed to treat everyone else like a freak? Who says it's a disorder to approach things from a different direction, even if it means you have a longer journey to destinations others have already reached? Because I can assure you there are places the "AS" person has seen that the "NT" people may never see or comprehend.
My kids' schools think they have various syndromes and disorders. Their psych thinks they have their own personalities. I think they would do better in a school where kids are taught to recognize the human right to disagree and do things your own way. I teach my kids that they are different because people are, that they are rare because they are, because we are. I help them learn to cope with their individual obstacles. I want them to always know they have free will.
A diagnosis used to be a desirable thing. But why do I need a doctor's not to be accepted into society? My mom has been convinced by my sister that I have AS. It's the closest she's come to accepting my personality after trying for twenty years to make me be someone else. And she still apologizes for me. If I think an apology is in order, I'll make it for myself.
But I'm done apologizing for being driven by a different motivation. And being told that a bunch of adults who hardly knew me agreed that I was different would have done nothing to make my life better when I was a kid. Twenty years later, there's always a new reason for the same thing. The flaw here is having a standard set on human personality, not on the kid who doesn't have the same one as most of the other kids. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Mom2ATeam Friday, March 11 @ 16:53:32 EST
(User Info | Send a Message) | | It never occurred to us NOT to be open with our daughter about her AS diagnosis. She was only 4.5 when we started to suspect it and she was diagnosed soon after she turned 5. She knew she was different. She knew that the kids in her daycare class were picking on her because of it, but she couldn't understand WHY she was different or verbalize HOW she was different. Once we had a name for it and talked openly about the areas in which she has difficulty, it was much easier for her to accept. In the same way that I've always thought a child who is adopted should just grow up with that knowledge, Alana knows that AS is just part of who she is. We're all made wonderfully different. Her twin sister excels in math and loves art and soccer while Alana is reading far beyond her grade level and loves music and theater. And even at this early age, we've made it clear to both of them that they're free to ask us anything. And they do. I'm praying it will continue in all areas as they grow up. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by earthmom Sunday, April 24 @ 03:26:02 EDT
(User Info | Send a Message) http://www.earthmombooks.com | | I think it's positive to explain this to the child in order to arm him, give him understanding, give him the safe place to return to - those are huge deals. Don't underestimate how huge a deal this can be - I had several suicide attempts as a teen. You don't want to wait until it's too late in that regard.
I didn't have any idea until I was in my 40s and I've been totally thankful every moment since (now 50). My son has AS and as soon as I understood I told him. He was in deep denial and angry for a couple of years but now has accepted it totally and we have open and honest talks that are very helpful to both of us and very helpful to how we relate to one another.
When I read these sort of articles I always wonder Is it only this one child that is affected, though? At this moment I know 3 families with an Aspie child, that I see CLEAR symptoms of AS in the mother. The mothers themselves don't recognize the symptoms and deny having any - it's just 'the child's' problem.
I think when you have a child that is diagnosed, it's time to take a very serious, and very honest look at yourself and your spouse. It's so much more therapeutic and helpful when it's recognized and shared with the child rather than labeling them as the odd person out (even within the family) and the One Who Has A Problem.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by anon77 Tuesday, March 15 @ 17:54:23 EDT
(User Info | Send a Message) | | That's the right thing to do. I'm almost 17 now and was never told, found out like 8 months ago. That added alot of clarity about my head. Alright now with the occasional social misinterpretation, just don't have too big of book on my childhood stories. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Resa Wednesday, March 16 @ 17:59:45 EDT
(User Info | Send a Message) | | Our son was diagnosed at 4yrs old and confirmed by school pyschologists in kindergarten. He struggled with meltdowns alot but was an extremely bright child.
In first grade we had to move to another state and it was a horrible transition. He knew none of the kids and had all new staff so his meltdowns got worse and the children were not drawn to him at all. So we decided to share with his classmates that he had aspergers in hopes the children would be more accepting of him and not shy away and since we were telling the classmates... then we knew he should know also. We didn't call it aspergers at that age because we knew the kids wouldn't understand it but we continued to speak with his class each and every year until 4th grade. It was at this age that our son really took ownership of his short comings and even participated in the question and answers. The kids were all over it asking questions about how they could help our son. We drew the kids in by mentioning famous people with aspergers like the creator of Pokemon and the stage manager of "KISS". We told them about his interests in Star Wars, computers and video games (something they all like also).
We started what is called a "Circle of Friends". Developed by a Sped Ed. Teacher in Nebraska. We introduced it to our school staff along with many other things including "Lunch Bunch". All reinforcements of social interacting.
Circle of Friends is basically a support group for your child and it includes family, teaching staff and a hand selected group of kids that basically look out and are friends with your child at school. I highly recommend it especially since our son will be starting middle school next year and we all know how tough that can be without much support.
We also share with our child our own quirks because we all have them to some degree but our child just has the extreme version of it. Everyone needs to belong to a tribe especially in their own home. So don't shy away from sharing with your child that you have anxiety or some OCD tendencies or you like the tolietpaper roll to unroll from the bottom instead of the top. : )
An educator in my city had a child on the spectrum who never told her child he had AS and while at a sporting event he did something wonderful and the crowd ( who all knew) started cheering crazy because everyone was so proud of him. There was a TV station there filming and they asked why the crowd was going crazy so someone told them he had Autism. He went home that night and on the evening news they mentioned him doing a great job and that he had autism. He was a 9th grader finding out he had AS on a tv and was devastated beyond consoling.
It is every parents decision to decide when it's best for their child to be told but I think the sooner the better.
Good Luck to you all.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by davidsivy Thursday, March 17 @ 19:04:54 EDT
(User Info | Send a Message) | | you did a good job telling your son that I to was diagnosed with Aspergers and im 16 right now and my Mom never told me till last summer before i turned 16 i felt that she lied to me for nearly 16 years why couldn't she of told me sooner I ask my self that every day |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by QueenoftheOwls Friday, March 18 @ 17:11:35 EDT
(User Info | Send a Message) | | What a great article. I wasn't diagnosed until I was well into mid-life, but from 1st grade on, I knew I was different than the other kids. I spent most of my life trying to figure out what was "wrong" with me, and no one could give me the answer. I cannot imagine any kid with Asperger's not suspecting something by the time he has been in school a couple of years. On the other hand, I have heard from other people who have been diagnosed with AS as adults, and to them it came as a total surprise. They never realized they were different until a younger relative, a child or nephew or even a grandchild was diagnosed. So I would say, if your child is getting on quite nicely and doesn't think there is anything "wrong" with him, why burden him with his diagnoses, but if the child begins to suspect that there may be something that makes him different than other kids, I would certainly tell him. From my own experience, I wish I had discovered the truth at an early age. Of course, that was not an option back then, as no one knew the term "Asperger's" in the sixties or seventies. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by conundrum Thursday, March 24 @ 17:47:49 EDT
(User Info | Send a Message) | | I am now almost 32 and self-diagnosed a couple of years ago. When I was Gregory's age, the diagnosis of "Asperger's" didn't exist. If it had, I would have been relieved to be told about it. You definitely did the right thing--it sounds like it has helped him immensely. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by ms_katonic Saturday, March 26 @ 04:46:41 EDT
(User Info | Send a Message) | | I didn't even know what Aspergers was until I was an adult. I wish I had known when I was a kid, it would have made my childhood so much easier. I'm glad you told Gregory, it really will make a difference. I really can't fathom parents who would keep that from their kids - the kid knows they're different! Not having any friends and getting constantly bullied will teach them that! I think keeping something like that from a child is less about the child's wellbeing and far more about the parents not wanting to admit out loud that there's anything wrong. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by RIOT-RIOT Thursday, March 31 @ 23:58:52 EDT
(User Info | Send a Message) | | oy vey!
why does somthing like this has to be a big deal for petes sake. it is imoprtant for an aspie kid to know he/she is aspie, i knew all of my life. im glad this lady is on the level. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by mzjmmom Friday, April 01 @ 15:35:55 EDT
(User Info | Send a Message) | | We're still waiting for our appointment. I suspect my son has AS and I've suspected something since he was 2. He's almost 8 now. I've had to argue the case for testing him with my husband, but I think he's convinced now that there is a need. I'm still working on my in-laws. My son is difficult, to put it mildly. I love him dearly, but now he's struggling in 1st grade and I just want to find out what we need to do to make things better for him...not easier for us! That's all I want. Whatever will help him, make him happy and help him grow. I love that you were up front with your son and I love your way of telling him "good news/bad news". I'll try to remember that if it comes to that. I need to get the book. My son's teacher is unaware of Asperger's, so I asked her to google it. I want an educator's opinion on it and I want her to think about it when considering my son's behavior in the classroom.
I want the same as every mom. A happy, healthy child and I want him to have a safe place to be "just himself". |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Nurylon Monday, April 04 @ 13:59:26 EDT
(User Info | Send a Message) | | I thought it was illegal not to tell the patient what his medical condition is. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by bigdaddy95 Sunday, April 10 @ 18:20:00 EDT
(User Info | Send a Message | Journal) | | Actually I found out that I had Aspergers when I was much more little (like 5) and when I found out I think in my brain I just said "You know what? I don't give a damn."
And I have been happy ever since. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Nordlys Friday, April 22 @ 08:47:44 EDT
(User Info | Send a Message) http://alicesacco.deviantart.com/ | | My mum though i was ready to know that when i was 13. But i have always been aware i was different. I had an early diagnosis (age 3) so my parents could help me during years. I think all childrens are different, for some childrens knowing the truth may be helpful, for other it may be an obstacle. Parents know what they should do. |
- porch swing by mikesarmiento Friday, May 27 @ 07:01:13 EDT
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Tulip Wednesday, June 01 @ 10:23:36 EDT
(User Info | Send a Message) | | "Finding out" doesn't work for the perfectionist-type. Trust me, it worsens it to it's greatest fear in all of us. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Lime Friday, June 03 @ 14:16:48 EDT
(User Info | Send a Message) | | Great way to introduce "the mental state" to our child,
for me there is nothing more important than the true,
my 6 years old boy is aspie and I know there is much to do and learn,
I learn everyday something new from my boy and the great abilities he has because of this disorder I am so thanksfull for finding this web |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Laure_66 Monday, June 06 @ 08:40:05 EDT
(User Info | Send a Message) | | Great decision Joanne. Asperger people are the best :-) |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by westybsa Monday, June 20 @ 17:23:26 EDT
(User Info | Send a Message) | | Well to tell the truth I wish I would have known when I was in the second and third grade which is like 6 or 7 years old why I had such a hard time with social skills and controlling my emotions. I do not blame my parents but it still upsets me that I did not get diagnosed until I was 19 years old even with all the testing I went through as a kid. Why is it so hard to get a diagnosed is something that has never made much sense to me. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by PrisonerSix Thursday, June 23 @ 12:29:33 EDT
(User Info | Send a Message) | | This is great to read. I've had social issues most of my life. I was constantly yelled at and punished for my problems, yet nobody ever explained to me what it was I did wrong, and what I needed to do to put it right. It just never made sense. Growing up with a NT sister who was a master manipulator, who often tried to sabotage the few friendships I had, and whom I was constantly compared to didn't help either.
They also would force things on me I had no interest in, and even force me to spend time with that same sister, and that also made matters worse. This stuff even lasted into college, when my sister who was supposed to move out didn't, and they continued with the constant trying to fuze me to her.
I did eventually heal from many of the effects of that upbringing, but not before having a breakdown first. I've since found someone to marry who like me, likes staying in over going out, and doesn't mind the fact I spend a lot of time with my computer(so does she) and my ham radio.
I still have some problems, but I am getting better.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by Christine314 Thursday, July 07 @ 06:33:27 EDT
(User Info | Send a Message) | | I love your post and they way you dealt with telling your child. We also enjoyed the "Can I tell you about Asperger Syndrome?" book.
My dilema about telling my son was being sure about his diagnosis first. I really didn't want to tell him 'well mom think's there is something wrong with you, so we are going to a bunch of doctors and specialists' For us it was a long path to diagnosis. Starting with me knowing something was just not right, then teachers, pediatrician, behavioral pediatrician, project TEACCH, school counselors, neurologist etc.. He was in 1st grade when the process was started and it was about a year until we had the diagnosis confirmed. It was the behavioral pediatrician that we met with that told me absolutely to tell him. When we see her she always includes him in the conversation. Even as a 2nd grader he recognized that he matched the criteria for Asperger's. Being as analytical as he is I think it was a relief to understand a reason for, and a validation to the differences he was observing but could not communicate to us.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by knoble7264 Sunday, July 24 @ 15:59:06 EDT
(User Info | Send a Message) | | I love the relationship and trust you have with your son. My AS son copes very well with his diagnosis and has a superb support group in his peers, teachers and the general local community. It helped me enormously to know that he would always find his way home, or have a helping hand if he got stuck and I wasn't there. My elder son however is dyslexic and took every opportunity to exploit this and 'explain' why he was less than able to do something. Like AS, it can be difficult to know where the dyslexia stops and the brat begins.
Thankfully he is past this stage, or maybe it is now his partners problem and not mine!!!
As being disorganised is part of the dyslexia diagnosis I don't know if he would have been different even if we hadn't told him about his condition. Being disorganised of course if highly unlikely in AS. chalk and cheese my kids.
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by trenchcoatguy Saturday, July 30 @ 03:01:33 EDT
(User Info | Send a Message) | | Thank you so much for being amongst the parents who have the decency to be upfront with their children, my parents didn't tell me i had AS until i was eighteen, and it distanced them from me greatly. It was like all my time with them throughout childhood had been a lie. It was like my entire life until then had been a lie fabricated and upheld by my entire family. I don't think of them like family because of this. I cant think of them like family after finding out how badly i was lied to. Its like they thought if they didn't acknowledge the problem it wouldn't come up. It did come up though, i knew i was different the day i came to public school, i suspected they were keeping something from me when i was five. But you did the right thing, on behalf of your son thank you. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by larballoon Friday, August 12 @ 14:57:31 EDT
(User Info | Send a Message) | | My son was diagnosed at the age of 6. The therapist pulled me aside with a sad look on her face and quietly stated, "I have been working in this field for over 15 years. Your child has the most severe case of Asperger's Syndrome I have ever seen."
As you can imagine, I raced home and researched Aspergers while kicking myself mentally for not having realized that my child's 'quirks' weren't just quirks. I contemplated how I was going to break the news to a six year old child. It never crossed my mind not to discuss it with him, especially since he had expressed to me that he felt different from other kids.
I sat him down and said, "You have Aspergers. That means you were born with a gift that most people will never have. Your gift is that your brain is super smart. But, it also means you have to work harder at other things like writing, balancing, climbing, jumping, and making friends. Luckily, your smart brain will allow you to accomplish the other things that are hard for you right now. And your dad and I, along with some doctors will help you learn to do these things as well."
My child asked some questions and I answered them as honestly as I could. We also bought him a kid's book titled, "What it is to be me: An Asperger Kid Book". I highly recommend it for any parent with a newly diagnosed young child. My son read it over and over, and he related to the book. We also discussed famous people that had Aspergers.
He is 7 years old now and prides himself on having Aspergers. He realizes that he has the potential to excel in any area of his choosing, and to find a place in the history books as one of the greatest scientists/inventors of the world.
As for me, I wouldn't change a thing about him. I also find pride in his uniqueness and intelligence. With loving support, I know that he can continue to find happiness and fulfillment throughout his life. I think I must be the luckiest mom in the world. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by frc6050 Sunday, August 14 @ 13:02:18 EDT
(User Info | Send a Message) | | To me, it's not that simple whether to disclose to the child or not. My son was diagnosed at 2.8 yrs old with autism. At the time, he was clearly autistic. He went thru tons of therapies and by age 5 he was dramatically better, and now at age 11 he is basically recovered. People who don't know of his diagnosis would not know. He still has some traits that present closer to Asperger's now, but he is not Aspie. So we don't use any label with him at all.
He knows he has some issues, like anxiety and some social awkwardness, but that's about it. We address those straightforwardly, but not via a label. Is that wrong? I think that in his particular case, using a label would be more harmful than helpful since he does not fit the descriptions any longer. If I told him, he would google it, and would probably be perplexed and upset about the list of symptoms, since they don't fit him.
I am not in denial and I am not ashamed of him. He is an amazing, smart, funny, loving child. Would those of you on the spectrum think I am doing the wrong thing? His therapist (MFT) agrees with my approach... When he is older, perhaps I will have to tell him of his initial diagnosis of ASD, but I don't see the benefit of doing so now. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by vincenzia Monday, August 15 @ 15:51:22 EDT
(User Info | Send a Message) | | It is so wonderful to read about other parents that feel the same way I do. I have a sign up in my son's room that reads;
"Believe my words, I promise to always tell you the truth."
Love from mom |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by PaintingDiva Monday, August 15 @ 17:23:13 EDT
(User Info | Send a Message) | | My son is twenty years old. He has never been formally diagnosed with Aspergers. I did not figure this out until he was about 16 years old. I took him to more than a few therapists, for the meltdowns in the classroom, for the refusing to only work hard on the subjects he liked and flunking the rest, and for his obvious unhappiness. It wasn't until he was 16 and we met with a counselor recommended by his High School and when my son was out of the room, the counselor said to me, 'there's something wrong with that kid, I recommend getting him a full neurological work up'. He was very blunt. I was offended at the time and did not do what he suggested. I am sorry I did not. It did however make me take a hard look at Aspergers. Where I saw all my son's traits listed.
I suggested to my son that he take one of those online tests, he was offended. I probably could have been more diplomatic, I have some aspie traits myself. No surprise. He used to be a honor roll student until he hit 8th grade. I believe he was bullied unmercifully all the way through school. He limped through high school, doing well in math and science and barely passing his other classes. By his senior year he was failing everything except science and a computer elective. He was not doing well in AP Calculus, a class he chose to take, because the teacher insisted on a lot of group work, not his thing. We had to move him to the alternative HS, bare bones curriculum, do your homework in the classroom, so he would get his HS diploma.
He went to community college for one semester, got an A in astronomy and flunked everything else. He went back for one week the second semester with good intentions and then quit. He told me later, "Nobody talks to me there" by then I was digging deep into information on Aspergers. I had discovered Michelle Garcia Winner's website, socialthinking.com which I highly recommend to anyone on the Asperger spectrum.
Long story short he told me he didn't want a job or school because he couldn't deal with people. He moped around the house, and by April he went to see an MD to get on an anti-depressant, and by July he had a job as a dishwasher at a restaurant where he told me 'the people are nice here.' Hurray right?
Well yes, hurray he worked there for almost a year, he was being taught to do prep work in the kitchen, he was sharing video games with friends at work, and dare I say it, he seemed happy. But last month he quit work, they said he is welcome back anytime but he doesn't want to work there anymore. All he does is hide in his room and work on teaching himself Japanese. He went off the anti depressant and it is feeling to me a lot like when he quit community college. He will not tell me why he quit, I suspect that either a summer hire was being nasty to him and he didn't know how to deal, or some social issue came up.
What is my point? He has never accepted the idea that he is an Aspergian. I recently read John Robison's new book and gave it to my son to read. It is still sitting in the same place where I left it. At least he didn't throw it out of the room.
Had we been able to tell him when he was 8 years old what the deal was with his brain, he might be a different person today. However at that time not many people even knew what it was, never mind all the so called therapists who saw my son. Oh he has ADD, oh he is bi-polar, oh he is defiant, and the advice from family and friends? Never ending.
I am hopeful that he will come to accept who he is and be willing to work on his social issues. He thinks small talk is stupid, he doesn't get it, he has told me that when someone is friendly to him, he KNOWS they don't like him. Well if you don't smile at the other person who is trying to get to know you and won't do small talk, by the end of the conversation, they may not like you.
I guess I am saying that not all of us have 8 year old children who are happy to know what is going with their brain and their emotions and their social skills. I was told by Michelle Garcia that at his age, he will have to bump along for a few more years before he is willing to do anything about it.
Am I bitter? Absolutely. Do I wish I had known what was going on with him when he was very young? I most certainly do but that is water under the bridge.
We have a self selected audience on this website, meaning everyone here either has Aspergers and acknowledges it or loves someone who has it.
I am very interested to hear from those of you in your teens and twenties and what helped you get on with your life after you learned you had Aspergers.
Thanks and Namaste
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Treating children like adults (Score: 1)
by LovesMoose Wednesday, August 24 @ 15:08:25 EDT
(User Info | Send a Message) http://www.LovesMoose.com | | I really admire your openness with your son, but I must confess that it concerns me when we speak to children as if they are young adults and capable of understanding and embracing frank communications like that. I feel that children need a positive framework within which to explore a diagnosis that falls on the spectrum. Most seem to know they are different, but to bluntly tell a child that there is "good news and bad news" attaches a negative label to autism and can further alienate him from his peers. While it's true that his brain doesn't work entirely the same as other children, making such a strong distinction for him like that actually be quite hurtful. I don't feel that a diagnosis should be glossed over and excessively padded to protect these kids, but there is nothing "bad" about Aspergers. Bad news is cancer. I am inspired by your son's great success. He sounds like a wonderfully grounded and mature little boy, but I would encourage other parents who are reading this and who haven't reached some of those same milestones to carefully consider the words chosen to frame this diagnosis. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by pataso Friday, September 09 @ 06:44:01 EDT
(User Info | Send a Message) | | i love you Wonderful |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by vincenzia Tuesday, September 13 @ 14:37:24 EDT
(User Info | Send a Message) | | I am a mom in need of help.
Just like you, I feel it is very important that a child understands what he is going through, so when my son started asking questions, I told him the truth. I did it by the book. Explaining why some things are difficult for him, and that he would have to try very hard to master them. I spent hours on research of what to say and what not to say. I thought that we were on the same page and that he understood.
So you can imagine the shock when his teacher announced that he was using Autism as an excuse not to try and that in his mind it exempts him from preforming his daily tasks.
I educated him in order for him to understand and NOT to give him a reason to cop out or think he is above everyone else.
How do I bring him back on path? |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by PhDMom Wednesday, September 21 @ 23:02:55 EDT
(User Info | Send a Message) | | Hooray for Joanne and others saying "it's time." We broke the news when my daughter was 7, at the beginning of second grade. She was more than ready.
I used the good news/bad news talk. (I like Joanne's idea about one side of the brain has to learn to work harder! So true for all of some days, right?!)
It was such the BEST thing to do. Conversations about daily challenges now usually begin with my daughter saying "Mommy, I don't know if this is just me or the Aspergers, but...." and then we'll talk about what might have caused the problem. Not all problems are aspie related. And that's an important point to drive home with high-functioning kids.
(I am new to wrongplanet, but have others talked about how ridiculous "high functioning" is as a label? Not only is it not specific, it sounds like we're talking about a dishwasher! Anyway, that's our lingo...right?)
To all the moms out there debating: You know your child. If they can understand a good news/bad news talk, your child is ready to hear why life is hard work every day for him/her. Do it. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by PersephoneX Thursday, November 10 @ 17:54:09 EST
(User Info | Send a Message) | | Wow, I respect your choice but I have taken a different approach and I don't agree at all that giving a child their "diagnosis" is the right thing to do at all. It's limiting and sends a negative message. It feels wrong to me on such a deep level that I feel compelled to address my reasons.
My entire family would fit into this "diagnosis" if we had allowed ourselves to be "diagnosed". The fact is, we are different than other people but I do not agree that we have an illness. Who we are can not be "cured" and I would not want to be "cured", even if I could be, because I have come to love my mind. If we were the majority ( and by the looks of statistics, we are becoming more prevalent), would the others then need to be diagnosed and medicated so they could be more like us and taught to imitate us to fit in?
My grandfather would fit this "diagnosis" and he designed aircraft for the US government with only a 5th grade education. He died a rich man after leading and extraordinary life.
My mother was a member of Mensa, she played concert piano at age 9. She skipped 2 grades in school and went on to be a very adventurous person. She would also fit this "diagnosis".
I see the world in patterns. I'm a furniture designer (Surprise: I make geometrically shaped furniture that fits together like a puzzle), an inventor, a writer, have worked in advertising as I have come to understand humans and hat they want quite well and I fit this "diagnosis".
I have 8 children, all of which are unique and colorful people and at least 6 of would fit this "diagnosis". Every one of them is gifted beyond belief. I have home schooled them and actually have the advantage of knowing the challenges first hand and have managed to train them without them even knowing that they may have different thought patterns than some others. We are blood relatives of Thomas Jefferson and I thus believe that the answer to whether or not he shared this "diagnosis" is yes.
At home we have teach things like: personal space is that imaginary circle that is around everyone, Not all people are as nice as we are, Not every question demands an oral essay, The joys of making eye contact when you're speaking to someone, etc. Guess what? They do wonderfully in the "real" world.
By the time my children ever think they have a different kind of mind, ( if it does ever occur to them) they will have already learned so much more about who they are that is quintessentially more important than that they are not like someone else.
My wish for every child would be that their parents learn to focus on who they are rather than who they are not. This is a lesson for all people of every kind.
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nike mercurial orange (Score: 1)
by lydia0 Thursday, March 22 @ 03:32:14 EDT
(User Info | Send a Message) | | Have you thought about what you want adidas f50 adizero people to say about you after you’re gone? Can you hear the voice saying, “He was a great man.” Or “She really will be missed.” What else do they say? One of the strangest phenomena of life adidas football boots is to engage in a work that will last long after death. Isn’t that a lot like investing all your money so that future generations adidas predator cleats can bare interest on it? Perhaps, yet if you look deep in your own heart, you’ll find something drives you to make this kind of contribution---something drives every human being to find mercurial vapor superfly iii a purpose that lives on after death. Do you hope to memorialize your name? Have a name that is whispered with reverent nike mercurial soccer cleats awe? Do you hope to have your face carved upon 50 ft of granite rock? Is the answer really that simple? Is the purpose of lifetime youth soccer shoes contribution an ego-driven desire for a mortal being to have an immortal name or is it something more? A child alive today will die tomorrow. A baby that had the potential to be the next soccer shoes store Einstein will die from complication is at birth. The circumstances of life are not set in stone. We are not all meant to live life through nike total 90 laser to old age. We’ve grown to perceive life3 as a full cycle with a certain number of years in between. If all of those years aren’t lived out, it’s a tragedy. A tragedy nike ctr360 maestri fg because a human’s potential was never realized. A tragedy because a spark was snuffed out before it ever became a flame. By virtue of inhabiting adidas soccer cleats a body we accept these risks. We expose our mortal flesh to the laws of the physical environment around us. The trade off isn’t so bad when you think nike mercurial orange about it. The problem comes when we construct mortal fantasies of what life should be like. When life doesn’t conform to our fantasy cheap soccer shoes we grow upset, frustrated, or depressed. We are alive; let us live. We have the ability to experience; let us experience. We have the ability to learn adidas f50; let us learn. The meaning of life can be grasped in a moment.
Lydia
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by GrungeFlannel Tuesday, March 20 @ 03:14:04 EDT
(User Info | Send a Message) | | There is truth in doctors being human too. There is also two things your son could do. Either conform or slightly conform. Nobody actually is a total "non-confomist" in the most extreme sense. That doesn't exist. So when your child is around any environment it will affect them indefinitively. Now what could be said is how your child responds to what the world says. Being an aspy is like having a clean slate with less dirt on it as far as I am concerned.
I do think that having ignorance of the world is a far better thing than embracement of all of it or the majority of its views on things. |
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by zxj1234 Wednesday, February 15 @ 21:08:34 EST
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by zxj1234 Wednesday, February 15 @ 21:17:59 EST
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andy (Score: 1)
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Nike Mercurial Talaria (Score: 1)
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Re: To Tell the Truth - Asperger Mom (Score: 1)
by moniqueH Wednesday, August 29 @ 01:37:22 EDT
(User Info | Send a Message) | | Thanks for the post. I learned a lot from it. =) |
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