Replies to '12/19 Parents’ Ultimate Test: Dealing with Autism'

I also was very concerned when I read the title & lead-in... I have Aspergers also & I am hoping that that part of the Autism spectrum is also covered. It's very hard for me to tell people I have autism. When I do they just look at me like "Duh" I have to explain that there's different levels & spectrums of the disorder & that NO I'm not the rainman I don't have to get my underwaer on thursday from K-Mart but I do have some idiosyncrasies that result from this. Autism is a genetic disease, it runs rampant through our family. I am just learning about a diagnosis that was made on me over 38 yrs ago, I had the luxury of being born & raised in a military home for the first few years, where a great deal of the doctors were from Europe & already had knowledge of this disorder (Aspperger's), but my mother being young couldn't handle the diagnosis & dumped me off with my grandmother & never told anyone til i started to do my family history. I found a bunch of cousins on the internet & we were in our group chatting back & forth & one of the cousins started getting irritated with me then another told her to shut up & leave me alone cause she knew I had autism, well i got mighty mad at the cousin who was trying to defend me, but she started to explain everything that I do which is exactly like about 30 people in our close immediate family so I started to research it myself, when I told me mom I thought that's what was wrong with me she exploded on me & said she didn't ever want to hear that s**t again & I was just fine & didn't act like the other retards in our family. So she knew my whole life but I had to wait to find out. I was in MENSA when I was little, I can not memorize a phone book, can't even remember where I put my keys, I rock when I get upset, I don't like being touched, but I have to touch everything, can only wear certain clothes, I talk funny sometimes get some things mixed up to the point I stutter when i'm trying to say things. I have 4 children 3 verified with Aspergers which I probably wouldn't have had had I known about my family history but they are wonderful functioning incredible human beings. I was very violent as a child/teen because I was beaten into coma's by an angry step-father but now I'm doing fine, I've never been violent with my children. I will continue to "adjust my underwaer in public" because that's who I am. I've learned to deal with it, & now that I know what my problem is I can deal with all of it easier. I don't take meds but I probably should... my meltdowns are less frequent now that I know what's causing them but I have the luxury of having a wonderful husband who shields me from alot of lifes irritants, if they could replicate him we'd have all the problems for autistic women solved but we can't. I have found people to be very curious & very understanding when I tell them, mostly they want to know what "it feels like", which is good for me because it pulls the focus off of whatever was stressing me out so bad that I had to declare it to a complete stranger, & gives me time to reload my guns so to speak. I thin the new Asperger's diagnosis is the replacing the ADD/ADHD diagnosis & those 2 things are very different. Which is very dangerous. We live in Washington who has an autism center & they diagnosed me as an adult & my teens & one adult child. They have support groups for us, for parents & a great website. Again I hope that all of the spectrums of this disorder are covered here bacasue I don't want someone running from me because they think I'm going to pound on them. Have you ever had your daughter think of volunteering with a school program for autistic kids? No one else is going to understand them like we do! There was a lady at the store with 3 autistic kids, 2 were very severe, she was freaking out & the kids were running around flapping there arms screaming & I found the middle point of the worst one, sat down in the middle of the floor in his circle & waited for him to run by & made an airplane noise finally he stopped & sat next to me & started making the same noise, then I stood up went to his mom's cart held on to it, the other 2 fell in line & we walked out to her car. She asked me how I did that, I told her I was autistic too & that he obviously got overloaded & was trying to drown out the sound of all the people but especially the cash register & that he just needed another focal point. She said it was okay for me to do it but she didn't think she could Huh? I said lady if your kid was bleeding in public you would put a band-aid on him & give him the care that he needed wouldn't you she said of course well this is him bleeding. Her & I are friends now she has my number & isn't afraid to use it! LOL! Also have your daughter try janitorial work, I do that when my health permits, no people around I do what I have to, & it's consistent work

I'm a High Functioning Autistic person myself, and the odds of getting Autism is actually around the 1 in 168.

 

These odds reflect all the Autistic Spectrum Disorders or Pervasive Developmental Disorders combined including Classic Autism, Rett's Syndrome, Childhood Disintegrative Disorder, Asperger Syndrome, and Pervasive Developmental Disorder - Not Otherwise Specified.

 

If each Pervasive Developmental Disorder is treated differently and not merged into one, the odds are still considerably less.

 

As for living with Autism, I'm going through the same experiences as your Autistic Daughter.

 

Employment wise, even though I have a University Degree and a College Diploma, I still have a tough time getting job in the Information Technology field because of hidden negative perceptions from potential employers. 

 

However, I am seeking help from Government and Private employment service centres for disabled persons.  Your daughter should get help from disability related Employment Services centres as well.

 

Getting your daughter into a day program, sheltered workshop, or other adult service centre programs also help.  In some cases, because Autism is considered a mental health related disability, they could accept her into these programs as well.

 

Emotional meltdowns are also part of the Autism experience, and you have to do your part in supporting her endeavours.

 

Keep in mind Autism is a lifelong commitment for all parents, whether you like it or not.  It even applies when a person recovers from this disability.