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Tell Me About your Asperger's Kid

Discussion in 'disABILITIES Community Board' started by tink2013, Jan 24, 2013.

  1. kirstenb1

    kirstenb1 DIS Veteran

    Feb 23, 2010
    Bravo Cierese!!! So well stated!!

    One of my great frustrations with autism is how fractured the community is. Some folks want a cure, some folks would shun a cure, etc. It's hard to move foreward as a group without some common ground.

    You would make a great leader at Autism Speaks, or ASA!!
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  3. a1tinkfans

    a1tinkfans Spreading Some Pixie Dust Today!

    Aug 12, 2006
    just in case you pop back over...
  4. Cierese

    Cierese Mouseketeer

    Feb 1, 2011

    Aww, thanks. I try to advocate, but its not always easy.

    Anyhow, I used to work with a young man that was a part of a group (club) called Young Life. He participated in the Capernaum ministry and was looking to be a leader one day. It's not for everyone, but definitely worth checking out if you have children middle, highschool, and college aged. younglife.org/Capernaum
  5. Donna M

    Donna M DIS Veteran

    Aug 8, 2008

    FortForever has had a difficult time recently. I haven't read about many people with children who have reached her son's age; many things changed for them.

    It's very hurtful and insensitive for anyone to imply she doesn't love her son, life is very trying for them now.
  6. kandb

    kandb DIS Veteran

    Apr 22, 2006

    Yes, I do think everyone has a right to their opinion, but I was just trying to point out that she seemed very angry as did her son that she was describing. Having alot of anger, cannot be good for her or her son. I did not put her down or say she did not love her son. To be honest, I feel very sorry for her. Maybe a good support group or counseling can help. I wish them the best.
  7. blue65829

    blue65829 Mouseketeer

    Feb 25, 2010
    I can't tell you about my asperger's kid, since I don't have kids, but I can tell you about me, as an adult aspie.

    I know there are levels, but as someone who's very hf I just want to say that I graduated college, have worked at the same company for 11 years, and I'm a married home-owner. I do not have kids because I don't think I could deal with that.

    Over the years I have learned how to manage myself, making sure I sleep enough, exercise, eat in a way that doesn't upset my stomach, that I don't disrupt my routine too much, and I have enough time to pursue my interests, etc. to prevent meltdowns. And when I do meltdown I do it privately.

    Of course there are things that I would love to change about myself, but overall I think it's MUCH easier to be an aspie adult than it was to be an aspie kid or teenager. I have so much more control about building my life to make myself comfortable and happy than I did when I was a kid.
  8. PatMcDuck

    PatMcDuck DIS Veteran

    May 12, 2000
    I agree with some of this. My brother, who I suspect has it (he is over 60 now!) got his masters in library science. And he works with computers. My nephew is majoring in computers. These are fields that work better than others for people with A.

    For example, my oldest son sell new cars. This requires a certain set of skills than a person with Aspergers would likely not have. (heck, I could not do it either!)

    I have a son with Down Syndrome (and Autism). I know many people with DS kids, that swear they would NOT change them if they could. I never understood that. I would cut off my right arm for my son to not have these things, esp the Autism. He is loving and happy, yes, but he is 23 now. It gets harder, as we parents get older. However the people who swear they would not change their kids, are sincere, so I respect their opinion.
  9. kritter47

    kritter47 Mouseketeer

    May 6, 2010
    As an adult with AS myself (and personally, I hate the use of the word "Aspie" - it sounds far too cutesy to me for something that informs my personality every moment of my life, but that's just me), I agree with this to a point. In terms of many of my sensory issues, I have a much easier time now than I used to for a variety of reasons.

    But I also disagree to a point. I have a lot harder time connecting socially now than I used to because I do not have as many natural points of contact with other adults who must accept me as part of a group (such as a classmate or a club member). I remain fundamentally stunted socially because my grasp of body language and nuance is poor. And I feel that more now as an adult than I did as a kid.

    To the OP - I would absolutely get someone with more training to look at your child at this point. There are far too many kids diagnosed with an ASD at this time, at least IMO, many diagnoses made by absolutely well-meaning people who only want to help. Your child could have an ASD. He could also have something else (a non-verbal learning disorder or SDD). Or he could just be developing at his own rate that will even out over time. Only people with specific education in this area will be able to make out some of these subtle differences. Plus with the (IMO, very necessary) changes to the DSM coming soon, it will be helpful to know where your child will fit in the new world of labels.

    To the rest of the thread - I wish every day that I did not have AS. It does not just make me special or a different kind of normal. It makes me profoundly isolated from the rest of society. And I have a very high functioning case - I graduated on time, I have a college degree, I live independently with a cat and a great job, I volunteer and have other activities. But every day of my life I deal with idiotic issues from my brain, whether that's social problems or food-texture problems or body-awareness problems or whatever. I would give almost anything to have a magic pill or therapy that eliminates those, even though I know it would affect other aspects of my personality that I like. The negatives far outweigh the positives, and I always feel vaguely insulted by people on the outside who tell me I shouldn't feel that way.

    Now, I do not hate myself. I'm generally pretty happy, all things considered. There's nothing I can do to change my little oddly-assembled brain, so it's not worth angst-ing over. But that can coexist with the fact that I hate having AS and would wipe it from the face of the planet if I could.

    I also loathe the terms "neurotypical" and "neurodiverse" because I think those absolutely downplay what I go through on a daily basis. I am not normal (and that's okay!). I am never going to be normal. Pretending I am just another facet of normal is ignoring what the word "normal" means. You can be accepted and happy and all those important things without being normal.

    FWIW, I also don't feel society discriminates against me. Society has made rules based on what works for the majority of people, and everyone has their preferences/quirks/intolerances/whatever that have to be manged within that system, not just me. Others also have, for instance, the ability to read social cues hard-wired from birth - it's not discriminating for them to find my inability to read those off-putting or strange. It's just nature. It's my responsibility to ask for an accommodation where I need it, and I've never been turned down for something reasonable (taking my computer into a quiet conference room to work on a loud day in the cubicles, for instance).

    I cannot ask people to accept my weird quirks because they are disruptive to those around me if I indulge in them (one of my stims is humming). I cannot ask them to make their lives revolve around my issues (food texture problems - I will not eat a large swath of foods, but I put it on me to pick an appropriate dish or pick the offending food out in the vast majority of cases), For me, having AS has made me a ruthlessly logical person, and that logic dictates that I am in a distinct minority that has to function as part of a society with rules that exist for a reason, even if I don't understand them.
  10. tink2013

    tink2013 Earning My Ears

    Jan 24, 2013
    Op here. Thanks for the perspectives. We have our meeting with the school on Wednesday. We have decided not to let them use the autism diagnosis on his Iep until we have him evaluated by a developmental pediatrician. I think he does have some aspergers tendencies, but I am not sure they are profound enough to warrant the diagnosis. Thanks, again for your replies.
  11. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

    Mar 16, 2008
    Good luck, remember the characeritics impact do not have to be profound to create an educational need. If you are uncomfortable with the ASD classification for the timebeing an OHI classification also works although will not provide as obvious information to the teachers and staff reading it.
  12. emsmith

    emsmith Earning My Ears

    Jan 15, 2013
    I have read this whole thread and am amazed at how everyone of you have your own way of embracing your family member with AS. It helps me to understand my grandson better and to learn what might work for him in certain situations. He was diagnosed at 8 with Tourettes, OCD and mild AS. He sees a neurologist and psychiatrist. We have a wonderful school system that loves him and works with and around him. He has his mother go in at the first of the year and talk to the other children about TS and AS. It makes life easier on him when the other kids know. We are planning a trip to WDW in October and this weighs heavily on my mind. We will have to plan each day accordingly. I thank all of you for the insight you have given me. My heartfelt thanks to all.
  13. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

    Mar 16, 2008
    Just for clearity out of the list below the ADD portion of ADHD, is actually part of the EF characteristic of AS and Senory differentials is also a characteritic not a co-morbidity.

    • Gastrointestinal disorders
    • Sensory problems
    • Seizures and epilepsy
    • Intellectual disability
    • Fragile X syndrome
    • ADHD
    • Bipolar disorder
    • Obsessive compulsive disorder
    • Tourette syndrome
    • General anxiety disorder
    • Tuberous sclerosis
    • Clinical depression
    • Visual problems.
  14. tink2013

    tink2013 Earning My Ears

    Jan 24, 2013
    We had the assessment team meeting today, and it went as well as it could have, with DH and I disagreeing with the Autism diagnosis. The team wanted to give him the AU label so that he could receive special education services (for his reading, writing, handwriting, and possibly social help). We told them that although in our state, school districts are allowed to diagnose autism, we would feel more comfortable with a medical diagnosis, and that we would be contacting a developmental pediatrician to see what he/she says about the diagnosis. The good news is the school psychologist was really interested in getting DS the help he needs, label or not. So, we will make him a 504 plan so that he can receive multisensory reading instruction, as well as participate in the district's new dysgraphia program. He will also start a social skills group with the school counselor. I am proud of my district for wanting to do what's right for my little man, regardless of our agreement/disagreement on what to label his difficulties. We have his ARD next week (he has been in speech, but is actually being dismissed from it ;)). Once we dismiss him from speech and deny the spec. ed services, we will move directly into a 504 meeting to get him the help he needs. :thumbsup2 Thanks for all your input. I may be back once we begin this whole process again with the developmental pediatrician.
  15. dmiller64152

    dmiller64152 Mouseketeer

    Jan 7, 2013
    My DS8 has a medical diagnosis of ASD, but does not fit under the school criteria. He is also bipolar.

    I haven't read this entire thread but there's a saying ... "If you've met one kid with Asperger's ... you've met one kid with Asperger's." You may have to get a diagnosis to qualify for school services but what's more important is that the school address your son's specific issues. My son has frequent and severe meltdowns. During the school's evaluation phase, they looked at what precipitated them, and it was often simply the necessity of writing. His motor skills are poor and handwriting is beyond frustrating. So as part of his IEP, the school provides him with an aide whenever extensive handwriting is involved, and he has the choice whether to have her write or do it himself (the point of that ... he also hates being told what to do -- possibly more related to the bipolar than the ASD). Also, the school put him in social skills classes where he was required to have conversations on a non-preferred subject and, in the process, he developed an empathy that's rare in ASD kids. Another thing -- he actually uses math to calm himself, so for math class, he gets to join a 5th grade class (he's in 2nd grade) and, if he starts feeling stressed during the day, his teacher will hand him a sheet of math problems to work on.

    Point being, regardless of diagnosis, there's not another child in the world that presents as your child does. I hope you're in a great school district that will find his needs and meet them.
  16. MikeOhio

    MikeOhio Mouseketeer

    Jul 7, 2011
    The posts attacking a mother who simply expressed her views are disgusting and it makes me really question what kind of people you are. This is message board where people are expressing their experiences. There was no personal attacks in her message but yet she has received many personal attacks...disgusting.

    Also she is correct that the disease is easier to manage when the person is a child. You can protect them and shelter them. Once they are adults, it is often a cold harsh reality that the outside world will not be as accepting as parents.
  17. FortForever

    FortForever Disney since Day 1

    Aug 16, 2011
    Thank you. :grouphug:

    What you mistook for anger are actually common actions of people with Aspergers. They often push past people, although I don't know why. Even though that is what comes natural to my son, I taught him to follow society's rules. Now that he is an adult, he does his own thing and ignores what I taught him. Am I annoyed? Yep. Do I hate him? NO Am I angry? NO

    When he does this stuff (that I consider rude), he is not angry at all. This is where I am confused because the parents here do not seem to understand the most basic things about Aspergers. They do not act like us. Pushing past someone is not an act of anger in their world, it's normalcy.

    Not engaging in conversation is not an act of defiance or anger. Once again, it's just Aspergers being Aspergers. I forced society's rules on him as a child. He KNOWS how to behave properly but has no chosen to say, "screw society, I'm doing things my way." Not saying this is good or bad, but I will say that it gets on my nerves.

    I also did not teach my son to hate his disability. He's not stupid. He doesn't have to be taught that, he hates it quite easily on his own. He doesn't dwell on it. Neither do I. I am just reflecting on conversations we have had in the past.

    Anyone who knows us in real life would never say the rude things the people on this board have. In my opinion, you have to be a bit on the angry side to attack strangers on the internet for sharing their personal feelings. A bit of projection going on, maybe?

    My son does not have the help of any agency, social worker, placement counselor, etc. He got through college and got a job on his own. He has bought his own car, pays his own way, is responsible, kind, and caring. He turned out pretty good with Aspergers considering what a hateful, sucky mother I have been accused of being.

    BUT, besides all the wonderful things about my son that I love him and am proud of him for, lurks the part that will drive me nuts at times. It's his Aspergers. It's the part of him I was posting about in my original post. I didn't feel all this background was necessary since the OP only wanted to know about life with Aspergers.

    I felt I was in a unique position to offer insight into living with a young adult Aspergers son. I am glad he works as much as he does. When he was home, his quirks were worse. Now that he is busy, he has much less time to concentrate on them. I don't think it's terrible to be thankful for the time we have away from each other everyday. It saves both of our sanity.

    When reading through all the new posts, I came across one telling me how I should have worded my statement in order to get the sympathy of the group. I wanted to thank you for your concern, but getting the sympathy of anyone was not my goal. My goal was to share my perspective as the parent of a young adult with Aspergers.

    My thoughts and experiences do not requiring editing, as they are my own. They do not apply to anyone else. My feelings about Aspergers, the condition, are my own opinion. I stand by that. I have no bad feelings about the people who suffer with the condition.

    Thank you. :flower3:
  18. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    First - people need to keep in mind that communication over the Internet with just written words is a lot different than in person, face to face.
    Words can be perceived much differently than the person who wrote them intended.
    With just words, we are missing all the other social cues that come from being able to hear the 'speakers' tone of voice, facial expressions, body language, touch. People are much quicker to take offense to words read on the Internet than if the same words were said to them in person by the same person. One of the reasons is that lack of social cues, but another big reason is that when writing back and forth, there is not the immediate 'give and take' of verbal communication.
    And, there is a lot less ability to clarify or validate that what you heard is what the writer meant to say.

    From the standpoint of 'hating' a condition ( and, I am using 'condition' to mean pretty much anything that the majority of people don't have. It could be autism, Asperger's, diabetes, cerebral palsy, Down syndrome, etc.)

    Most conditions have 2 extreme groups - people who are very upfront that they consider their condition (or child's condition) to be a big part of their identity and they would not change it even if they could.
    In the other side, are the people who hate the condition, but not the person.

    The main thing the 2 groups have in common are that neither understands the viewpoint of the other side, because it is so different than their own. There are a lot of people in the middle or who move from feeling to feeling, depending on the effects of their condition at the time.

    Extreme words like "hate" "monster" tend to bring out extreme feelings. There is a man who wrote a story called Schyler's Monster about his family's journey with their daughter who has a brain malformation. Most of the things written here are tame compared to comments I have seen written to him on his blog. Even though he writes about his daughter with great love and understanding, people get stuck on the word "monster" and can't get past their own feelings to see what he has written.

    I just have time for a few more words right now.
    I have a niece and nephew who both have Asperger's.
    The nephew was considered "weird" from a very early age, but was not diagnosed with Asperger's until he got to about 6th grade. He did have other diagnoses, which did not seem to fit totally, but did explain some of his difficulties. He is still struggling to fi displace as a young adult.

    My niece was diagnosed with ADD at a pretty young age, but got a diagnosis of Asperger's as an adult. When she was in a Psychology class in college, she took an Asperger's scale and I still remember the comments from friends and relatives when she posted on Facebook that she had pretty much gotten 100% on the scale. My favorite was "And, this surprises you in some way?"
    She has a Bachelors and a Masters degree and a very good job that makes use of her skills.

    So, 2 people in the same family at very different places.

    I am going to move this to the disABILITIES Community Board at this time since it is not about WDW and will fit better there.
  19. jodifla

    jodifla WDW lover since 1972

    Jan 19, 2002
    OP, please be sure to get a second opinion by a developmental pediatrician who is skilled in DIFFERENTIAL DIAGNOSIS.

    DO NOT trust a school psychologist. I've not met one yet that knew what they are doing! I'm sure there are a few out there, but these school psychs typically have little training in actual diagnosing. And they have NO accountability.

    What the school is giving you is just a educational label, NOT a diagnosis.
  20. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

    Mar 16, 2008
    I agree a clinical diagnosis is always worthwhile, although on average clinicians are no more competent in this area than school psychologists. Having worked with many families my experience is that when a school psychologist actually makes a call of ASD/Aspergers it is correct in a very high percentage of cases (at least 95+%), when the verification is done by a highly qualified clinical team specializing in ASD/Aspergers.

    Good news is that within 2 years we should have a partial but reliable genetic scan available, so it will no longer be a question of if our kids have ASD genetics, but more importantly we can focus on the impact it has on them.
  21. dmiller64152

    dmiller64152 Mouseketeer

    Jan 7, 2013
    My school did a functional evaluation rather than a clinical diagnosis, and made a determination of areas where he needed support. The school did not label my son with anything; in fact, a comprehensive psychological evaluation deemed my son with ASD, but he did not fit the educational standard for being autistic/Aspergers. But it's ironic that I had to get the psychiatric evaluation before the school would grant the iep. Point being, what your child needs from an educational perspective may be vastly different from what he needs in terms of personal skills, counseling and even meds. It is imperative that the parent deal with those issues that are not within the school's purview.

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