When did you know your child had Asperger's/Autism?

Christy - posted on 02/04/2009 ( 18 moms have responded )

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Our son was 5 just a couple weeks shy of turning 6 when we got the dx of Asperger's through the school. I was totally devastated. I knew that Rob was different, but I thought that he was a genius with some crazy quirks, which he is, it just has a label. I was just wondering how ya'll knew. Rob was having serious issues in kindergarten. He was acting out a lot and shutting down when he would get into trouble. He couldn't keep up with group activities, etc.

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Amanda - posted on 02/06/2009

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a lot of what i have read lots of his problems seem to go towards aspergers except the imagination part , things i have read the children struggle with imagination which is exact opposite of my son, in fact at times it worries me, as he spends so long with his games, one behaviour support lady said it is where he feels safe, he can control his own imagination, and every thing be just how he wants it. Trouble starts when other children try and play this game with him and dont play it exactly how he wants it !  Do other peoples children behave the same ?

Crystal - posted on 02/06/2009

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When Jayden was around a year old, he still hadn't said a single word, and didn't verbalize like other kids.  I started to have suspicions then, but I blamed it on having just read a book about an autistic child.  My suspicions just grew though, and I finally started asking his ped. about it.  She just told me that since he loved to be hugged he couldn't be autistic.  Then she'd start blaming me for his delays, saying "If you'd just talk to him more," and "Work with him at home," when she recommended a speech therapist.  It wasn't until he had a seizure last August that we were finally referred to Seattle Children's Hospital.  He was diagnosed 5 days before his fourth birthday.

Kate - posted on 02/04/2009

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My son Milo is 10 and was diagnosed with Aspergers at age 8. I knew something was up from the time he was about 2 1/2. He never stopped moving, flipping his hands about, wiggling his legs, running jumping moving moving moving. He would bang his head in the crib (this behavior dissipated when we moved him to a bed.) We asked our pediatrician about it, but she told us it was a phase, that boys are different from girls (because we had an older daughter) and that his developmental milestones were normal.



We asked her again when he started kindergarten and experienced meltdowns in school and got in fights with other boys. He'd been in daycare and not had such problems before. Again she brushed it off. It was his first grade teacher that got involved with him and that recommended Love and Logic. If you're not familiar with the disciplinary method of logical consequences, you should google them. It was an important first step with our son and it really helped him for all of us to be on the same page. Anyway she served as a resource for him through second grade, and his second grade teacher would allow him to go sit in her class when he got overstressed. But he continued to have issues with staying seated and making noises during class, and getting in fights.



I can't forget, one day after he'd been in a fight and he told me he didn't know what it was about, the other kid just up and hit him first. He was clueless as to the fact that this person was aggravated. Turns out the other kid had a reputation as a bully and repeated suspensions for starting fights, and Milo didn't even realize he was being picked on. This rang a bell with something I'd heard about autism and social development delays, about not being able to interpret nonverbal cues and facial expressions.



His cub scout leader was the one who suggested that he was similar to her own daughter who had a sensory integration disorder; we did some research and stumbled upon a checklist for Aspergers... and from there on it was just technical. He hit on most of the characteristics and it all just made sense. His 3rd grade teacher got us the paperwork to have him evaluated through the school and by the end of the year we had an IEP for him. This turned out to be a godsend as he changed schools the next year and we had the tools to make sure he had a support system like he had had at the old school.



From there, we also went on to see a psychiatrist because of other symptoms that have been diagnosed as a coexisting mood disorder. But she also confirmed the diagnosis of Aspergers and so has his new pediatrician



Mostly I want to say, don't be devastated! Your child is still the same kid you love. But your son is also entitled to an equal education, and the options available can make that easier to achieve. We had Occupational and Speech Therapy through the school (but not just during the school year) and issues we had just learned to live with--the constant motion and funny accent-- melted away. (Mind you, he can still pull out some hilarious accents when he wants to, but he's better understood by people outside the family now.)



When his handwriting skills proved insufficient to the timed writings required in his class, we were able to get him an AlphaSmart so he could type his compositions instead--and suddenly he got A's in spelling and reading, too. Turns out he had to work so hard to write he would get frustrated and not want to finish the assignments. What worked for other kids was not working for him. Now, he's worked hard enough and developed enough that he can do his work by hand, it just took him longer to get there.



Just remember the diagnosis does not make your son anything he wasn't already. Its just a tool for you to make sure he gets the best education he can.

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Theresa - posted on 02/06/2009

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We are waiting for an evaluation for our 6 yo daughter Kari. She has sensory issues. Really dislikes being touched by people outside family, doesn't care for loud noises and she has rocked since she was about 9 months old. Does not participate in sports - we signed her up for soccer last fall, she went out on the field, but pretty much just stood there - didn't really try to participate. During warm ups she again had no clue. She is a terrible loser for any games we play and because of it her sisters don't really like to play games with her. She is very intelligent - has a vivid imagination and when others don't "play" her way she throws a fit. She doesn't really act out in school ,but if her best friend is not around she doesn't seem to do as well. I'm thinking after typing this alot of things are like what I have read in this post. It was advised after a psychological exam that she could possibly be PDD. Anyway, we will wait and see what the results of the eval are.

Kate - posted on 02/06/2009

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Quoting christy:



... I want to express that I  love the way he is and would not change him. I do hope that he can learn to have the friendships he desperately wants.





I used to despair that Milo would never make friends.  I have an older daughter and I worried from the time he was 3 that he didn't seem to make friends with the other kids like she did.  Although she had her own social issues, she was always very interested in other children and the things they said and thought.  Milo just never had that kind of social interest.



One thing I've noticed is that he makes friends based on shared enthusiasms.  Milo has had a few specific friends outside of school, one when he was about 7 who moved away after about a year and one for almost two years now (he's 10.)  It was a big relief when he first made friends with Rex; they were both into King Arthur and Monty Python's Holy Grail and they would play hilarious role play games for hours.  They were really on the same page with that.  Now his best friend is Jason, who has pretty severe ADHD and though their behaviors are very different, they have a unique patience for each other's differences.  Mostly they play video games and star wars role play games. He's very into theater at school and likes a friend who is not afraid to act out scenes with him.  He likes playing within the "rules" of the character.



Another interesting thing I noticed is that most of his friends at school are girls.  When they had a 4th grade dance last fall, Milo was actually invited by a little girl (Miracle.)  That was a pretty interesting event.  He really had fun while the dance floor was empty just improvising and sliding about to the music, but once it got crowded and the noise was more than just music he began to get uncomfortable so I took him home after about an hour.   Still, I was very proud of him  to have had a "date."  At 10, that's a good experience to have under your belt.  Even though both of us Moms probably spent more time together than Milo & Miracle did at the dance.  :^)



 

Jean - posted on 02/06/2009

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We found out when my son was in the 4th grade. He too had issues at school. He would go to the sand box and point out the different rocks that each grain of sand came from, kids would look at him like he was a freak and walk off and he would do crazy stuff like scoot on his bottom through the sand saying he had worms. He would do something outrageous to cover up for the original bad interaction. My son is very intelligent and other kids didn't know how do deal with it so he never had and kept friends. Because of his lack of friends he was always depressed and felt worthless. My son's principal had asked me if I had ever considered that he might have a/s and I did some reading up on it and it fit him to a T. We are not on meds for it, but we do take him to a therapist and we explained it to him. Since having the dx for this and seeing a therapist, my son knows that "God made him special" and that he's not some freak like kids tried to make him out to be. With this his confidence has gone up and he has made a few friends that he plays with on a regular basis. We are so proud of him.

Catherine - posted on 02/06/2009

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i thought that, it breaks my hart to think she so desperately wants to understand other people an the world around her but as she's got older she's coming to terms with the fact she's different it's very hard but its not all down hill so shuting down and retreating in to her own world might not be such a bad thing if it helps her to cope but yes she is very much like a pea in her own pod.

Amanda - posted on 02/06/2009

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hi catherine yes that sounds like my son, at school they describe him that he shuts down when things get to much and just retreats in to his own little world, very sad .

Catherine - posted on 02/06/2009

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yes my daughter is very imaginative likes her own company she spends hours talking to her self she just goes in to her own world because she finds this one to hard to cope with .

Catherine - posted on 02/06/2009

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hi amanda just readin your post and i can,t tell you much that sound like my katie she's 13 and only just had a formal diagnosis of asperger's she amaze's me and has come so far i could spend all day taiking about her she's perfect and very special..

Amanda - posted on 02/06/2009

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My son is going for assessments at the moment and possible diagnosis is aspergers, he is 6 years old and he is struggling in school, he has a few friends but finds the school environment hard to cope with, he has hit out at other children when he gets stressed, he has a very short attention span, he makes noises all the time which makes disrupts the other children in learning, he doesn't like team sports or games that you dont take turns with, he likes taking turns as it is ordered but free for all games he hates. i find it sad seeing him on the sidelines when other kids are all off playing, he cant ride a bike and is very fearfull of things that move such as fairground rides. He much prefers his own company, most of the time. One thing that is unusual i think ! is he has an amazing imagination but it is difficult to bring him back to reality he spends hours playing his imagination games, making noises and acting them out. He talks almost constantly and merges conversations and i have no idea what he is talking about !! but expects me to know !!!!  Not sure what the asessemnt will turn up but he needs help in school as he is really struggling .

Catherine - posted on 02/06/2009

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hi my name is catherine i have a 13 yr old daughter,it was around the age of 4 when i started to think she could be a.s.d as she could not talk and had many other difficulties, its been a long hard road but december last year she finally had a diagnosis of asperger's syndrome i only hope she has a better future

Becki - posted on 02/05/2009

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Hi Christy -- I wanted to encourage you as well to enjoy who your son is. My son also was diagnosed with Aspergers/PDD; initially diagnosed also by the school while evaluating him for Kindergarten readiness (this after 3 years of developmental preschool). He was speech/developmentally delayed and had sensory issues and received help from age 18 months; so we were fortunate to have received early intervention.



Our official medical dx really didn't come through until a year ago after a long waiting list for probably one of the best doctors in this field in our state. Because of all the early intervention, his primary issues now are behavior and social -- unfortunately, school is a very social experience. Although academically, he is an A/B student.



I have had the same sadness as you for my son because I have moments when I want him to experience sports like "normal" kids. I've watched him try to join in with the other kids just in our neighborhood and most of the kids just seem to not "get" him. HIs perception when they begin to play a little more rough, is to play more rough - which our doctor refers to as Impulse Control. In other words he has a very impulsive behavior -- he doesn't know how to stop even when he knows it is something he shouldn't do. The doctor said that "he is either all or nothing; there is no middle with kids who have impulse control issues". We have been trying an ADHD med for the last year to see if this would help and have noticed quite a difference. The goal in the med was to put him on something that we could give him only once a day, and that would not change his personality (because even the doctor said he has a very good sense of humor for an ASD child). We've been trying a new med on the market called Vyvanse and it seems to be working for him. Although, he still does not participate in some things the way we would like. But maybe his thing isn't going to be sports -- he has an eye for arts (I've noticed).



However, what we have tried to do, is to use the things he is strong at and build on them. He does like to go fishing, swimming and build things. So, we got him involved in Cub Scouts - a very active den and pack that actually does things. Last summer, he went to cub scout camp for a week (day camp) where he learned to shoot BB guns, bow and arrows, run obstacle courses, canoeing, do some woodworking, etc. I never saw him so excited. He doesn't usually tell me about his day without me asking him questions -- but he told me about camp. Naturally, he will go again this summer. We're also adding church camp and we are looking for additional day camps that he can go to.



Anyway, don't get discouraged -- just enjoy him where he is. It's hard, but at least you know you're not the only one having these issues. :-)

Kris - posted on 02/05/2009

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hi my name is kris i also have a son that has Asperger's he is just turned 12 this january, i knew noting about this till about maybe 3 years ago i always thought my son was special amd gifted till 1 day i seen a show on tv and said thats like my son then i started to look into it and read up on it more. I think i am very lucky that he doesent act out in school or whatever, he loves to babysit fish camp.I find with my son he hates noise and talks about the same thing over and over again, but now looking back as a new mom back then i didnt think my son had anything wrong, but now all the signs were there. Its nice talking and meeting new parents that have similar situations.

Christy - posted on 02/05/2009

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Rob has severe issues with winning and losing. Sometimes he is okay wiht losing and others he has the complete meltdown. He has done the social stories in school and will continue them in his new group. we have started to use melatonin and it seems to help get to sleep pretty quickly. We still read stories every night and on the rare occasion that we don't he fusses. He doesn't like to talk about school usually with me or any problem that he has. I hate that he doesn't like team sports because he truly loves them and loves to play them. I understand about shopping Rob doesn't like it either. Sometimes he doesnt' mind it and other times he begs to stay at home. I usually let him ride in the buggy around the grocery store so that we can get in and out quickly, again sometimes this is good and sometimes it isn't.  His dad and I are trying to lose weight and get healthy, When we went to go shopping for school supplies this year there was a lady that was overweight and he made the comment that she needed to workout and lose some weight to get healthy. She of course thought he was being rude.  We didn't hear what he had said to her and when we asked him what he had said to her because of her comment to us about him being so rude he flipped out. My husband was going to take him out to spank him when he finally told him what he had said. We understood that he wasn't being rude, he was making an observation. His dad and I were and still are overweight but like I said we are trying very hard to get healthy and he just trying to tell her to do the same. We don't tell our kids that we are working out to lose weight and get skinny, but that we are trying to get healthy for them.



Anyway, this upset him tremendously that he had made her mad at him. He literally cried for about 30 mins. We are still learning about all this still. We made a bad decision in going to spank him and upset him more.



Thanks again for all the help



 

Kerry - posted on 02/05/2009

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hi Christy, try social stories books about friends, Rob probably is not aware of the social 'rules' for friends and may pick some interesting people (with their own baggage) for friends.  My sons didn not have much luck in this department until we had 'drummed' the rules into them.  Like its not always about you, take care to see your friend is also feeling well etc etc.  sometimes play the game your friend likes.   We kept play dates shorter and gave specific times (our night routine was run as a schedule and did not have times but started at 5 pm with bath, pj, telly dinner*at around dark* teeth some telly till around 8.30pm or when mum got sick of hearing the arguing voices, then bed. lights out about an hour after they got into bed). So the play date went home at 5 pm  so we could do our family night routine.



I didnt use pecs, just the same thing every day, my son got offended at pecs told me that he was not a retard he knew what he had to do, and then he would rip shedules or pecs up.!!



If they can work for your family it might stop you having to repeat yourself a million times, and it gives the nt kids something to aim toward so they know what their brother should be doing. NT kids are happy to help if you ask them to see that Rob follows his shedule, that way rov doesnt see them as bossing him, he sees they are enforcing mummys rules.  onece things become rules, written down is usually enough to call it a rule, AS kids like to follow the rules.



I was unmoveable with timetable since the children were babies so the start time for feeding was always the same they knew no different, so i guess i was quite succesful.  MY auty who still lives at home at 21 starts to wander at around dark looking for his dinner, still.



When he was young he never stayed still, never got sick, didnt like talking to or visiting people, wouldnt wallk into a hospital or a shopping centre without a tantrum (noise and flouro lights, smells). would not make eye contact but would cut down trees in the garden with a handsaw, usually a perfect straight cut right at the level of his reach.  He could give me no real asnwer when i asked why? but over time i would get short statements about a certain bug that liked that tree, or something about stinging bugs, that i could eventually add up to he saw a documentary about stinging animals and they were filmed in a tree just like the one he cut down.



He always hated and still does, team sport even though i made him go to team activitys when he was young, usually he would blow a possible 'accidnt' at the sport out of proportion and make it something really nasty.

Christy - posted on 02/05/2009

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I guess I need to clarify that Rob will be turning 8 in March. We have come to understand his diagnosis. We understand that that is why he is having these meltdowns and doesn't really want to play group sports. I'm still sad for him at times because I can see him standing on the outside looking in on social situations. We have just started with a place called kidnetics.  He has went for his speech eval and will be going for his ot eval next week. After that we will be starting the social groups. He gets speech and resource help through the school. We will be starting counseling for him also. He was also dx with ADHD, which he has started strattera. I want to express that I  love the way he is and would not change him. I do hope that he can learn to have the friendships he desperately wants.

Sandy - posted on 02/04/2009

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I have twin boys with ASD.  I knew there was something wrong when they were very young, before 1 year.  I suspected autism before they were 2.  They were not diagnosed until they were 4 1/2.  It took me that long to convince doctors and therapists for referrals to the right clinic. 

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