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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

How have things changes over the years?

Posted by on Oct. 17, 2013 at 11:19 AM
  • 21 Replies
When I was a young child, late 80's early 90's, I had a lot of neurologist appt.s but was never told what they were for. My mother never told me why I was "different" but I wasn't. As I have gotten older I have noticed larger differences. When I started doing research on my son's possible autism and there were a lot of traits that I also had/have. It makes perfect since. I light switch went off in my head and I realized it is okay that my son is autistic, I am too. Why did it take 26 years to find out? My mother was and is in denial. She refuses to acknowledge my differences, she doesn't understand why I didn't like to go to clubs and party when I was younger, I was always a home body. I always ever had one or two friends and a lot of associates, I wouldn't even acknowledge them in the hallways. I didn't need to be popular, but everyone did know me. I was socially awkward. Do we as parents accept this better now, because it is more prevalent? Or because we are more open minded?
by on Oct. 17, 2013 at 11:19 AM
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Replies (1-10):
puertoricangeek
by on Oct. 17, 2013 at 11:26 AM

BUMP!

kajira
by Emma on Oct. 17, 2013 at 11:26 AM

I was diagnosed with autism as an adult.

I'm not sure exactly what you are trying to ask. I don't think parents accept the diagnoses better - I think they have better screening tools and there's more help and acceptance for needing said help.

My family was in denial that I was autistic. When I was diagnosed as an adult, they had a hard time believing it, and I scored under classic autism.

I'm very very quirky. :P

puertoricangeek
by on Oct. 17, 2013 at 11:37 AM

I mean just years after all of my testing, that I had no idea what it was for, one of my mother's friends son was DX low functioning. This was 12 years ago. The only ones I remember being DX were low funtioning individuals. I do beleive it has a little to do with better testing and DX but I think we are more accepting. Between research and support groups.


I am too. I just always thought I was strange, now I know I am normal with a hundred more quirks than everyone else.

Quoting kajira:

I was diagnosed with autism as an adult.

I'm not sure exactly what you are trying to ask. I don't think parents accept the diagnoses better - I think they have better screening tools and there's more help and acceptance for needing said help.

My family was in denial that I was autistic. When I was diagnosed as an adult, they had a hard time believing it, and I scored under classic autism.

I'm very very quirky. :P


Momof4AEMW
by Gold Member on Oct. 17, 2013 at 11:45 AM
1 mom liked this

I think there is more knowledge on it now than there was back then.  I always said my sister was weird, isolated, didn't really socialize and have more than 2 friends, very booky, smart, musically inclined.  Now I would say she had aspergers.  I don't think she will ever go get a dx, but  I'm sure that is what it is, and back then I would not say my parents were in denial, just did not know.  Just like I was dx with dyslexia in college but never knew in school growing up.  And my dad was a teacher/principal.  I think in those times we did not know what to look for or that something may be anything more than 'quirky' or a little educational struggle.

I also think back then the down syndrome, CP, wheelchair disabled, non-verbal autistics were all kind of lumped together as 'retarded.'  Oh how I loathe that word, but that is what was portrayed when I was growing up.  No one knew those kids, no one knew about their disabilities, and no one tried to.  They were isolated from the others and just weird.  My friends and I thought it was contagious.  So no one grew up trying to understand or see the beauty in each of them, trying to befriend them, help them, etc.  And no one was trying to educate us anything different than what we were thinking.

Now, I think everything back then was a bunch of hoowie.  I have a child with down syndrome, a child with autism, a child with dyslexia, a 3rd sn child.  And I have educated myself about their disabilities, therapies, interventions, etc and put them out there for everyone to know and learn from.  I hope by the time it gets to my grandchildren that the 'R' word will no longer exist in the English language, and that everyone will just be known for their name and who they are, not their disability or ability.

kajira
by Emma on Oct. 17, 2013 at 11:53 AM

I was high functioning enough to fall under the radar for a long time. Girls are still less diagnosed than boys, because our symptoms often manifest differently, and we often present signs differently.

I have classic autistic traits in every category. I scored 18 out of 20 possible points on the ADOS test, with the cut off being 7-9 for PPDNOS/Aspergers and 10 for classic autism.

I still present them in a way that may fly under the radar to people who don't know what to look for. I shut down rather than meltdown usually. I rock, flap, stim, and have speech and issues reading behavioral cues, I don't always know what to do or say next with out a lot of planning, I need ritual, routine, and dislike change.

As an adapt, with adult maturity, I can adapt and be a lot more flexible than I was as a little kid, as a teenager, I'd survived a lot of bad situations, I think the reason I'm as functional as I am, is simply because of the childhood I had... I had to learn to adapt in order to survive. I had a rough childhood that had nothing to do with autism, but I do think my ability to not be as effected or traumatized by it long term, was a gift of my autism. It was a black and white thing. I was a kid, it was out of my control, I just had to survive and as an adult, choose my own path. That was my motto growing up.

Due to my difficult childhood, autistic behaviors, traits, and quirks got over looked... I had years of therapy, special ed, and doctors involved in my life, but rather than looking for the root cause, they just brushed it off as having a rough childhood.

I went to an autism doctor who wouldn't have preconcieved notions about childhood "making me appear" autistic, and just did the testing and scored me based on who I am, and how I behave, how I talk, how I act, how I think.

They did take my childhood into consideration and ruled out other disorders, such as PTSD (I was diagnosed with that.) turns out, I don't have PTSD, but I do have sensory issues, communication deficits, and other issues that are directly linked to autism that they over looked as a kid and made excuses for.

I was never mainstreamed in public classrooms, I was bullied by teachers and children alike for being different. I was also a target by predators because I couldn't talk effectively, or speak out for myself with verbal speech as effectively as I can write... and because of being in the system and the child hood I had, I was exposed to people who had questionable ethics/morals a lot more than I would have been in a traditional family unit who had their shit together.

I am definitely *not normal* by any stretch of the imagination, but I am okay with that, different... different isn't a bad thing. In my case, being different is the reason I have the life I do today, the reason I survived my childhood and was steadfast in my belief to change my lot in life, and why I also achieved my dreams. Pure stubbornness and a refusal to change my plans. LOL

I truly believe that being able to screen better, will do our children so much more good in life. Knowing and having answers allows you to adapt better, allows you to work with your quirks better, and allows others to treat you better because they'll understand WHY you're flapping like a bird, rather than getting frustrated that you can't "stop". LOL


Quoting puertoricangeek:

I mean just years after all of my testing, that I had no idea what it was for, one of my mother's friends son was DX low functioning. This was 12 years ago. The only ones I remember being DX were low funtioning individuals. I do beleive it has a little to do with better testing and DX but I think we are more accepting. Between research and support groups.


I am too. I just always thought I was strange, now I know I am normal with a hundred more quirks than everyone else.

Quoting kajira:

I was diagnosed with autism as an adult.

I'm not sure exactly what you are trying to ask. I don't think parents accept the diagnoses better - I think they have better screening tools and there's more help and acceptance for needing said help.

My family was in denial that I was autistic. When I was diagnosed as an adult, they had a hard time believing it, and I scored under classic autism.

I'm very very quirky. :P



puertoricangeek
by on Oct. 17, 2013 at 11:57 AM
1 mom liked this

I mean I was was not allowed to do things. I was stuck in the house , I read, did math (I was doing algebra in 1st grade) and listen and played music. I was in band/marching band, taught myself how to play all of my instruments. I got all A's unless the subject was boring and I had already learned it. Even though I started all of this I never saw myself as different. As I have gotten older I notice that my mother did. I have  9 and 5 year old sisters. They are treated completely different than me. 


The "R" word always bothered me. I would get in fights with other kids for saying it. I used to love to stop by the "special education" room and work with the other kids. I never thought that they should be separated. All of the children were so sweet.

Even to this day, because of my soical issues, and my sometimes delayed respons, if someone calls me stupid, I loose it. I believe the "R" word should be used as a discription for other things not person related. 


I am so happy that there has been so much research done and things are more easily found. 

Quoting Momof4AEMW:

I think there is more knowledge on it now than there was back then.  I always said my sister was weird, isolated, didn't really socialize and have more than 2 friends, very booky, smart, musically inclined.  Now I would say she had aspergers.  I don't think she will ever go get a dx, but  I'm sure that is what it is, and back then I would not say my parents were in denial, just did not know.  Just like I was dx with dyslexia in college but never knew in school growing up.  And my dad was a teacher/principal.  I think in those times we did not know what to look for or that something may be anything more than 'quirky' or a little educational struggle.

I also think back then the down syndrome, CP, wheelchair disabled, non-verbal autistics were all kind of lumped together as 'retarded.'  Oh how I loathe that word, but that is what was portrayed when I was growing up.  No one knew those kids, no one knew about their disabilities, and no one tried to.  They were isolated from the others and just weird.  My friends and I thought it was contagious.  So no one grew up trying to understand or see the beauty in each of them, trying to befriend them, help them, etc.  And no one was trying to educate us anything different than what we were thinking.

Now, I think everything back then was a bunch of hoowie.  I have a child with down syndrome, a child with autism, a child with dyslexia, a 3rd sn child.  And I have educated myself about their disabilities, therapies, interventions, etc and put them out there for everyone to know and learn from.  I hope by the time it gets to my grandchildren that the 'R' word will no longer exist in the English language, and that everyone will just be known for their name and who they are, not their disability or ability.


puertoricangeek
by on Oct. 17, 2013 at 12:15 PM

Exactly! I was in the mainstream, but I was in the back of the room with straight A's. I hated raising my hand and was in speech theropy until I was 12. I was told that I had a lazy tongue. Whatever! forming words is my issue. The sounds in my head are not making it to my mouth correctly. I tend to speak very loudly and fast to compensate. When I am on the verge of a shutdown, like you I do not meltdown, I slur my speech as if I am drunk or having a stroke. There are times when I just need to get away. Thank God I am breastfeeding and can get 20 minutes every 3 hours at work or right now, with everything at work and home, I would loose it. 

I was bullied but my mom volentered at my elementery school, taught at my middle school, and had persons she had worked with and people from church at my high school. I had a tendency to end up in the office on days schedules would change. I quit several jobs because of my schedule changing and them not consulting with me. 

I was forced to change my stimming from hand flapping to anything else, Now I will just sway, bounce, spinning, or click a pen. All annoying things that I completely get now. I would literaly get hit for hand flapping. I now only do that when I am excited. It is funny because my son and I will actually do it together. LOL


I grew up very dificult also. Let's just say I know the differance between abuse and disipline. I know when someone is lieing, more by there tone than"tells". 

I was considered very smart and that was why I acted like that. I quess that is why "Big Bang Theroy" is my favorite show. LOL

Quoting kajira:

I was high functioning enough to fall under the radar for a long time. Girls are still less diagnosed than boys, because our symptoms often manifest differently, and we often present signs differently.

I have classic autistic traits in every category. I scored 18 out of 20 possible points on the ADOS test, with the cut off being 7-9 for PPDNOS/Aspergers and 10 for classic autism.

I still present them in a way that may fly under the radar to people who don't know what to look for. I shut down rather than meltdown usually. I rock, flap, stim, and have speech and issues reading behavioral cues, I don't always know what to do or say next with out a lot of planning, I need ritual, routine, and dislike change.

As an adapt, with adult maturity, I can adapt and be a lot more flexible than I was as a little kid, as a teenager, I'd survived a lot of bad situations, I think the reason I'm as functional as I am, is simply because of the childhood I had... I had to learn to adapt in order to survive. I had a rough childhood that had nothing to do with autism, but I do think my ability to not be as effected or traumatized by it long term, was a gift of my autism. It was a black and white thing. I was a kid, it was out of my control, I just had to survive and as an adult, choose my own path. That was my motto growing up.

Due to my difficult childhood, autistic behaviors, traits, and quirks got over looked... I had years of therapy, special ed, and doctors involved in my life, but rather than looking for the root cause, they just brushed it off as having a rough childhood.

I went to an autism doctor who wouldn't have preconcieved notions about childhood "making me appear" autistic, and just did the testing and scored me based on who I am, and how I behave, how I talk, how I act, how I think.

They did take my childhood into consideration and ruled out other disorders, such as PTSD (I was diagnosed with that.) turns out, I don't have PTSD, but I do have sensory issues, communication deficits, and other issues that are directly linked to autism that they over looked as a kid and made excuses for.

I was never mainstreamed in public classrooms, I was bullied by teachers and children alike for being different. I was also a target by predators because I couldn't talk effectively, or speak out for myself with verbal speech as effectively as I can write... and because of being in the system and the child hood I had, I was exposed to people who had questionable ethics/morals a lot more than I would have been in a traditional family unit who had their shit together.

I am definitely *not normal* by any stretch of the imagination, but I am okay with that, different... different isn't a bad thing. In my case, being different is the reason I have the life I do today, the reason I survived my childhood and was steadfast in my belief to change my lot in life, and why I also achieved my dreams. Pure stubbornness and a refusal to change my plans. LOL

I truly believe that being able to screen better, will do our children so much more good in life. Knowing and having answers allows you to adapt better, allows you to work with your quirks better, and allows others to treat you better because they'll understand WHY you're flapping like a bird, rather than getting frustrated that you can't "stop". LOL


Quoting puertoricangeek:

I mean just years after all of my testing, that I had no idea what it was for, one of my mother's friends son was DX low functioning. This was 12 years ago. The only ones I remember being DX were low funtioning individuals. I do beleive it has a little to do with better testing and DX but I think we are more accepting. Between research and support groups.


I am too. I just always thought I was strange, now I know I am normal with a hundred more quirks than everyone else.

Quoting kajira:

I was diagnosed with autism as an adult.

I'm not sure exactly what you are trying to ask. I don't think parents accept the diagnoses better - I think they have better screening tools and there's more help and acceptance for needing said help.

My family was in denial that I was autistic. When I was diagnosed as an adult, they had a hard time believing it, and I scored under classic autism.

I'm very very quirky. :P




kajira
by Emma on Oct. 17, 2013 at 12:25 PM

I've written a lot about slurred speech and stroke-like behaviors when talking fries your brain. LOL

I won't ever consider myself normal, and frankly the lack of compassion, or tolerance for "different" has definitely made me glad I'm not so normal, I'm alot more tolerating of people being different because I'm different, know what I mean?

I can't work traditional job, especially if it required speech. I do fine as a writer from home, and as a wife and mom, and I had friends before we moved, I've lived here for 2 years almost and still haven't made new friends... LOL

I'm slow, it takes me years to make friends that aren't online... i'm really content to with the online social interaction I get. I don't really need to be able to "see" the person face to face to fullfill that "social urge".

I was never in a regular classroom - I had to get a GED to get a diploma, I'm technically a high school drop out, I've never done a full grade of any schooling, I spent most of my time in school in seclusion and special education classrooms. I never actually did classroom work, and I was always behind educationally because of it. Everything I know as an adult, is self-taught. I actually learn alot from homeschooling my kiddo because I read his books with him as he does the work. LOL

I memorized the GED instruction booklets and took the test. It's also how I passed my drivers test, I just memorized the book for the test... I am good about memorizing information for a short period of time - which makes me test well.

Proving I "know" the work is a different story, since I don't really know it. I just memorized it. LOL

I'm still nursing my almost 3 year old once a night. ;o I also had very strong beliefs about natural childbirth and breastfeeding. I actually had a homebirth with my daughter.

I was bullied and basically given the "suck it up cupcake" talk.... that I brought it on myself because I wouldn't stick up for myself.... but I tried too, but the teachers would mock me... I have some really odd memories because of the things I experienced as a kid, and when I share those stories, people often get really sad for me, but the reality is, I survived, i'm over it. LOL

Frankly, I am glad I'm not normal, people who are "big on being" normal seem to forget how hard others struggle, and have no compassion for being different.... and seem to have the attitude of "if you just try harder..."

Quoting puertoricangeek:

Exactly! I was in the mainstream, but I was in the back of the room with straight A's. I hated raising my hand and was in speech theropy until I was 12. I was told that I had a lazy tongue. Whatever! forming words is my issue. The sounds in my head are not making it to my mouth correctly. I tend to speak very loudly and fast to compensate. When I am on the verge of a shutdown, like you I do not meltdown, I slur my speech as if I am drunk or having a stroke. There are times when I just need to get away. Thank God I am breastfeeding and can get 20 minutes every 3 hours at work or right now, with everything at work and home, I would loose it. 

I was bullied but my mom volentered at my elementery school, taught at my middle school, and had persons she had worked with and people from church at my high school. I had a tendency to end up in the office on days schedules would change. I quit several jobs because of my schedule changing and them not consulting with me. 

I grew up very dificult also. Let's just say I know the differance between abuse and disipline. I know when someone is lieing, more by there tone than"tells". 

I was considered very smart and that was why I acted like that. I quess that is why "Big Bang Theroy" is my favorite show. LOL


wildchild.com
by Janine on Oct. 17, 2013 at 12:29 PM
I think we're more open minded now. Back in the day they didn't talk about stuff like that everything was hush hush.
puertoricangeek
by on Oct. 17, 2013 at 12:53 PM

One of my favorite sayings is "Normal people scare me" because, they kinda do. I actually see less compassion. I have been able to ignore most comments and remember that no one is better than anyone else. LIke I said before I beleive that my mothers huge control over any time away from her was a leading factor to why I didn't get picked on, or should I say allow it to bother me. I was called everything at home so kids at school really couldn't hurt my feelings, I didn't care if it did. I would never tell.

I will actuall zone out on the phone at work and spit off the pre memorized lines that I have made for myself. I wish I had a more taylored job that didn't cause so much stress. 

Growing up I had 4 best friends. one in elementery, one in middle and high, and 2 others in high. The sad part is when they were removed from my life, it didn't really bother me. No emotion tied to it. It took 2 years to cry about my grandmother passing and she was the onlyone who helped me growing up. I prefer the online friends in relation to "real" fiends. This is all of the socialilization that I require. 

Even with all A's I dropped out of school in the 12th grade. 2 credits to go. That was it. I still have yet to get my GED. Money is the issue eith that. I am pushing for march this year though.

My daughter will be 4 months on the 24th. My son is 3. I want to give them the best outcome possible. I am hoping for a job that I can do at home so that I can homeschool my kids. I love me DH but he is a little flightly when it comes to jobs, doesn't understand the imprtance of just quiting for stupid stuff. I would like a Aspie friendly home job.

My mom was my bully. I got it worse from her. All of the years of being called, stupid, dumb, retared. I am so glad I have nothing to do with her. There was much of nothing tht other kids could do that was worse.

I am glad that I am different. I see the world through differnet eyes than someone else.

Isn't this just typical. We could write a book if we keep this up. LOL!


Quoting kajira:

I've written a lot about slurred speech and stroke-like behaviors when talking fries your brain. LOL

I won't ever consider myself normal, and frankly the lack of compassion, or tolerance for "different" has definitely made me glad I'm not so normal, I'm alot more tolerating of people being different because I'm different, know what I mean?

I can't work traditional job, especially if it required speech. I do fine as a writer from home, and as a wife and mom, and I had friends before we moved, I've lived here for 2 years almost and still haven't made new friends... LOL

I'm slow, it takes me years to make friends that aren't online... i'm really content to with the online social interaction I get. I don't really need to be able to "see" the person face to face to fullfill that "social urge".

I was never in a regular classroom - I had to get a GED to get a diploma, I'm technically a high school drop out, I've never done a full grade of any schooling, I spent most of my time in school in seclusion and special education classrooms. I never actually did classroom work, and I was always behind educationally because of it. Everything I know as an adult, is self-taught. I actually learn alot from homeschooling my kiddo because I read his books with him as he does the work. LOL

I memorized the GED instruction booklets and took the test. It's also how I passed my drivers test, I just memorized the book for the test... I am good about memorizing information for a short period of time - which makes me test well.

Proving I "know" the work is a different story, since I don't really know it. I just memorized it. LOL

I'm still nursing my almost 3 year old once a night. ;o I also had very strong beliefs about natural childbirth and breastfeeding. I actually had a homebirth with my daughter.

I was bullied and basically given the "suck it up cupcake" talk.... that I brought it on myself because I wouldn't stick up for myself.... but I tried too, but the teachers would mock me... I have some really odd memories because of the things I experienced as a kid, and when I share those stories, people often get really sad for me, but the reality is, I survived, i'm over it. LOL

Frankly, I am glad I'm not normal, people who are "big on being" normal seem to forget how hard others struggle, and have no compassion for being different.... and seem to have the attitude of "if you just try harder..."

Quoting puertoricangeek:

Exactly! I was in the mainstream, but I was in the back of the room with straight A's. I hated raising my hand and was in speech theropy until I was 12. I was told that I had a lazy tongue. Whatever! forming words is my issue. The sounds in my head are not making it to my mouth correctly. I tend to speak very loudly and fast to compensate. When I am on the verge of a shutdown, like you I do not meltdown, I slur my speech as if I am drunk or having a stroke. There are times when I just need to get away. Thank God I am breastfeeding and can get 20 minutes every 3 hours at work or right now, with everything at work and home, I would loose it. 

I was bullied but my mom volentered at my elementery school, taught at my middle school, and had persons she had worked with and people from church at my high school. I had a tendency to end up in the office on days schedules would change. I quit several jobs because of my schedule changing and them not consulting with me. 

I grew up very dificult also. Let's just say I know the differance between abuse and disipline. I know when someone is lieing, more by there tone than"tells". 

I was considered very smart and that was why I acted like that. I quess that is why "Big Bang Theroy" is my favorite show. LOL



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