Tell Me About your Asperger's Kid

[kirstenb1]

Originally Posted by Cierese

I knew this was going to turn into a bash each other thread before it even started. Wow.

Anyhow, when thinking of how stressed out people get when learning they may be diagnosed with something such as autism or just about any other type of health issue be it mental, emotional, physical, etc.

What does a diagnosis do? It doesn't change the person. The diagnosis can be very helpful (as long as its not a misdiagnosis - my personal example would be a doctor saying I had anxiety and possible asthma and prescribed antidepressants and an inhaler when my actual problem was my thyroid and that was never addressed until I saw a cardiologist because it was causing cardiac issues.. this was my 3rd misdx due to this.. first was cardiac when I was 19, put on heart meds, found out I was pregnant -they assumed it was all due to pregnancy, then the above)

Sorry to get off topic. The OP wanted to know about each of your and your personal experiences. If she is new to AS/AD, then she needed to be reassured in sort of way. Not that you need to sugar coat anything but just that her child, if diagnosed, isn't somehow going to be a different person.

To OP: Whether your child is diagnosed or not, he will still be your child. Only difference is, now you can [hopefully] get the assistance that he's been possibly lacking. That's a good thing, right?? You life may get a lot busier and even hectic at times, but that would have happened anyway. As children age, their needs change. All have different attitudes, different likes/dislikes, quirks, skills (some academic, some sports, etc). ALL people (typical/nontypical) are different... some just more so than others.

Honestly, I have 3 kids...

My oldest (13yr old boy) has ADHD/ODD - it was a 'nightmare' when he was little (climbed on top of a 3 story apt building when he was 4, would run out of his school, store, etc into the parking lot from 4 up until about 8yrs old.. he pooped his pants until 8(it was always on purpose)... but he also had anxiety and depression due to a lot of things going on around him. We moved a lot, he switched schools, his dad is in the army and was deployed almost from the day we moved back to the US in 2002 (he was 2 at the time - this is when his behavior took a major turn for the worse). However, he's a very kind, sweet, considerate young man that has anger outbursts when his anxiety gets too high. Visiting with a psychologist seemed to help him with his anger outbursts. He just needed a place to be able to let out his feelings or aggression. All people do this differently. One child that I keep in the afternoons does this by writing and drawing his feelings.
Now, at 13 he still has all the same issues, but they are less and he's learned over time to known when they are flaring up. Sometimes he has to stand to play a board game with us or stand to do work at school. We've also noticed, for him, diet and nutrition (adding certain vits/mins) play a huge role. I can tell, for example, if he's eaten junk at school. Unfortunately, the school took out the salad bar and that used to be what he ate almost everyday. Now he's eating what they serve in the hot line and his ADHD/ODD is flaring up more frequently.

My daughter (11yrs old, middle child), is what you would call NT. She's definitely got her own unique personality and quirks. She's had digestive issues which has led her to be chronically underweight. Also has scoliosis. We believe this was the major contributing factor to her digestive issues. A wonderful chiropractor has just about succeeded to 'straightening her out' LOL. Anyhow, very little foot/leg/back pain, almost no digestion (constipation) issues and her last visit to Vandy showed her spine is near perfect!! Since puberty hit, she's turning into a sassy monster at times, but what do you expect? Oh I forgot.. she has a ton of med & food allergies.

My little guy (4yr old) - he's being referred for AS/AD eval. I've always known he was different, BUT its because I had experience and knew what to look for, etc. If he's officially diagnosed then it won't change HIM. He's the sweetest kid I know. His co-morbidities are more concern for me... Seizures, sleep apnea, sensory processing disorder, lactose intolerance, digestion issues and who knows what else.

I think the biggest problems (now please correct me if I'm wrong - but no bashing, that's not what this thread was about) are the co-morbids. I was just reading an article the other day about the prevalence of seizures as a co-morbid.... ever heard of absent seizures for instance... there are some types of neurological disruptions or even seizures that can be viewed as 'typical autistic behaviors'.

Ok, back to MY main topic. Please stop bashing each other for their personal experiences. Could just be that the negative experiences are more recent and still a raw spot that needs some reassurance, some kind words, understanding and hugs??? If you were having a rough time with things would you rather people bash you or reach out to you??? We all get so caught up in caring for our children that we often forget to take care of ourselves. I'm definitely one of those people, esp since I'm also a single mom and their dads are basically absent (one by choice, the other by army orders-lives in another country). I really hope all of you can find support within your local communities, church, mom's group, etc. Boards like this are great, but having someone you can lean on in real life is even better sometimes

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!!

[a1tinkfans]

Originally Posted by FortForever

I do not feel sorry for myself. I do not sit around all day wishing for things to be different. I did not initiate the subject of taking away Aspergers. I purely reacted to the statement of others (who are clearly trying to convince themselves) that they embrace their child's disability and would not change it.

THIS THREAD IS ABOUT ASPERGERS! THIS IS ONLY A SMALL ASPECT OF OUR LIVES, NOT THE ENTIRE THING.

Denial is every bit as ugly as Aspergers. To those of you who think your children don't know there is anything different about them. Ummm, yes they do. And by being in denial about it, you are teaching them that you are ashamed of it. Poor kids.

I am so done with this conversation. You just can't communicate with people who wish to be dense.

just in case you pop back over...

[Cierese]

Originally Posted by kirstenb1

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!!

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

[Donna M]

Originally Posted by kandb

Fortforever,
I do think you have a right to your opinion, but just by reading your posts, it seems to me that you have alot of anger. Your first post stated, that your son will push into people and not even apologize, he sounds angry as well. You also say that your son and you "hate aspergers" and it seems that that hatred has made you bitter and perhaps has frustrated your son and has not helped him with this "disability". I know raising a child with challenges can be frustrating and cause some to be resentful but I think it would beneficial to you and your son to let go of some of that anger. I wish you and your son well.

Really?

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.

[kandb]

Donna,

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.

[blue65829]

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.

[PatMcDuck]

Originally Posted by FortForever

I would like to point out that my son is also doing well by these standards. He graduated high school and college with a degree. My son has an extremely high IQ and that is not the problem.

The transition from school to work is where things are not so black and white. Finding a job in their field can be a challenge unless the interviewer is educated about, and accepting of, people with Aspergers. They can come off as strange and it puts people off. It hurts to say this, but I don't make the rules of society. I wish I did.

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.

[kritter47]

Originally Posted by blue65829

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.

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.

[tink2013]

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.

[bookwormde]

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.

[emsmith]

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.

[bookwormde]

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.

[tink2013]

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. Thanks for all your input. I may be back once we begin this whole process again with the developmental pediatrician.

[dmiller64152]

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.

[MikeOhio]

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.