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

Who else's kids have a dx of moderate to severe?

Posted by on Jan. 1, 2013 at 7:18 PM
  • 17 Replies
1 mom liked this

I've noticed that most of the kids of parents on here seem to have dx of aspergers, PDD-NOS or high functioning autism. My daughter was dx as moderate to severe, is there anyone else's kids with this dx? What do you think makes our kids have that dx instead? It seems like my daughter is so similar to those kids with a high functioning autism dx, but she was considered "functionally non-verbal" at the time which basically meant she could let us know what she wanted by showing us instead of verbalizing. Its been less than 6 months since her dx and she's speaking so much more now. I know she will get there. It makes me wonder, how accurate can the test be when our kids are not speaking right at that snippet in time?She is so intelligent, she just can't always show it when she's put on the spot.

Frankly I don't really care what her dx is, because it opened doors for her to get more therapies, so I wouldn't want her to lose it just for that reason. I am curious as to how other kids with the moderate to severe diagnosis have done as the years have gone on? If I was to listen to "experts", then I should not hold out a whole lot of hope for her ever living a productive and independent life with that dx. I don't listen, I think her abilities are limitless, it just takes her longer to get there.

It kind of bothers me when parents make a big point of saying my child is high functioning, or specifically stating that it is asperger's instead of autism, when it is all part of the spectrum. The traits seem so alike. Why can't we just call it all autism? I feel like its a caste system.

Violet's Mom

Twitter @autismnotebook

by on Jan. 1, 2013 at 7:18 PM
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Replies (1-10):
humbledmom310
by Kelly on Jan. 1, 2013 at 7:33 PM
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My oldest son received a classic Autism diagnosis (moderate to severe) at age 2 and half. He had severe speech delay and developmental delays. As soon as I got the diagnosis I took it merely as JUST A tool to use to help my child get the services that he needs. No written evaluation or diagnosis can predict what are children will be able to accomplish. My son is five years old and has made extraordinary progress. We need to make sure we do not use a diagnosis as a emotional barrier to unconciously hold our children back from reaching their true potential. 

VioletsMomTown
by Robyn on Jan. 1, 2013 at 7:40 PM
1 mom liked this

Thats great, is he speaking fluently now? That is what I want above anything else, just a conversation! I didn't even want to go through the dx, but felt like I had to so that we could access services. I can't stand psychobabble. My daughter is capable of great things, I know that, and I don't think it can be chalked up to a score on a piece of paper.


Quoting humbledmom310:

My oldest son received a classic Autism diagnosis (moderate to severe) at age 2 and half. He had severe speech delay and developmental delays. As soon as I got the diagnosis I took it merely as JUST A tool to use to help my child get the services that he needs. No written evaluation or diagnosis can predict what are children will be able to accomplish. My son is five years old and has made extraordinary progress. We need to make sure we do not use a diagnosis as a emotional barrier to unconciously hold our children back from reaching their true potential. 


JP-StrongForTwo
by on Jan. 1, 2013 at 7:42 PM

My daughter is moderate to high functioning. That is her DX. but it seems that it may be possible that rather than autism, she has hydrocephalus that is mimicking autism. if they can figure it out, and get a shunt in to drain it, she may end up being more typical than ever before. 

kajira
by Emma on Jan. 1, 2013 at 7:46 PM
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On the ADOS test, I score almost as many points as possible, yet if I didn't tell most people I was autistic, they'd just think i'm a nervous, quirky person with out realizing that i'm not actually nervous, the traits they see in me are.... autism in an adult who learned to function and hide it pretty well.

Functionally, I do okay - but trait wise, i'm about as autistic as you can get score wise.

I don't know how they'd label me. I have classic autism, and they made it so it just said ASD and explained how I met the criteria if I ever wanted disability. (Which, I didn't persue. I got it for peace of mind and so I could understand myself better and explain my quirks to others who work with me like doctors.... It changed my life to be able to say I'm not anxious, I'm autistic and need you to be patient with me if I get flustered or process slower than they'd expect a semi intelligent verbal woman to process information.)

Stuff like that. It does effect my life - but I wouldn't change who I am.

If they'd diagnosed me as a kid, i'm pretty sure they never would have believed i'd be the person I am today. I know that growing up, pretty much everyone thought it was a success if I didn't follow in my mom's footsteps and become a drug addict.... so, the bar wasn't very high for me when I became an adult I guess.

I did mature slower, but my life partner didn't mind my "child-like" quirks - because I was intelligent, and capable, even if there were areas he had to be patient with.

As an adult - my verbal spoken language skills are not as good as you'd expect for what I can express in written words.... I'm hit or miss if i'm understandable to people who don't know me.

humbledmom310
by Kelly on Jan. 1, 2013 at 7:49 PM
3 moms liked this

He is speaking fluently. :) reciprocating conversation is more difficult for him.He is currently working on answering "Why Questions" those and other abstract concepts are difficult for him when trying to hold a conversation. When it comes to him taking control of the conversation he has a very large vocabulary , way above his age level. He just turned five.
We have him in a Transitional Kindergarten class with typical peers his exact age. He is doing very well in that class academically but is still challenged with social interactions.

From what I have read about your daughter she seems a lot like my son.

Quoting VioletsMomTown:



 

Thats great, is he speaking fluently now? That is what I want above anything else, just a conversation! I didn't even want to go through the dx, but felt like I had to so that we could access services. I can't stand psychobabble. My daughter is capable of great things, I know that, and I don't think it can be chalked up to a score on a piece of paper.

 

Quoting humbledmom310:

My oldest son received a classic Autism diagnosis (moderate to severe) at age 2 and half. He had severe speech delay and developmental delays. As soon as I got the diagnosis I took it merely as JUST A tool to use to help my child get the services that he needs. No written evaluation or diagnosis can predict what are children will be able to accomplish. My son is five years old and has made extraordinary progress. We need to make sure we do not use a diagnosis as a emotional barrier to unconciously hold our children back from reaching their true potential. 

 


VioletsMomTown
by Robyn on Jan. 1, 2013 at 8:41 PM
1 mom liked this

You're awesome Emma, its always so great to hear your perspective. This dx is such a grey area, because it seems like our kids, and you,  are capable of being as intelligent as any other person inside, sometimes smarter, but just can't express it in a traditional way. I just hope my daughter is as productive and understood as you are, as an adult with autism. You seem pretty high functioning to me!

Quoting kajira:

On the ADOS test, I score almost as many points as possible, yet if I didn't tell most people I was autistic, they'd just think i'm a nervous, quirky person with out realizing that i'm not actually nervous, the traits they see in me are.... autism in an adult who learned to function and hide it pretty well.

Functionally, I do okay - but trait wise, i'm about as autistic as you can get score wise.

I don't know how they'd label me. I have classic autism, and they made it so it just said ASD and explained how I met the criteria if I ever wanted disability. (Which, I didn't persue. I got it for peace of mind and so I could understand myself better and explain my quirks to others who work with me like doctors.... It changed my life to be able to say I'm not anxious, I'm autistic and need you to be patient with me if I get flustered or process slower than they'd expect a semi intelligent verbal woman to process information.)

Stuff like that. It does effect my life - but I wouldn't change who I am.

If they'd diagnosed me as a kid, i'm pretty sure they never would have believed i'd be the person I am today. I know that growing up, pretty much everyone thought it was a success if I didn't follow in my mom's footsteps and become a drug addict.... so, the bar wasn't very high for me when I became an adult I guess.

I did mature slower, but my life partner didn't mind my "child-like" quirks - because I was intelligent, and capable, even if there were areas he had to be patient with.

As an adult - my verbal spoken language skills are not as good as you'd expect for what I can express in written words.... I'm hit or miss if i'm understandable to people who don't know me.


SandyLaxner
by Bronze Member on Jan. 1, 2013 at 8:59 PM
2 moms liked this

My 5yo DS ASD:  just recently I asked Dr for 1st time what level he thought DS was at,Dr said "Moderate Autism:.  he is a neuro-developmental pediatrician.  DS can read,write,is verbal,just starting to have convo's,eye contact improving,bolting decreasing,aggressive behavior almost nil,"makes jokes",is very affectionate,creative(building and drawing),and independent(woke up to him "making a cake"he had the oil,sugar flour in a bowl).  Only stimming is spinning,not every day.

kajira
by Emma on Jan. 1, 2013 at 9:10 PM

theoretically, I think based on traits, i'd be in the moderate to severe category.... based on their point system. 

However, in daily life, I look far more functional. If you do based on traits, and points, a lot of the people who hit the high functioning labels, actually are less functional than some of us, that are on the lower-functioning point system, but have it figured out and work with it.

I'm not sure a point system, or a label really can say how a person is giong to turn out, or do. 

Quoting VioletsMomTown:

You're awesome Emma, its always so great to hear your perspective. This dx is such a grey area, because it seems like our kids, and you,  are capable of being as intelligent as any other person inside, sometimes smarter, but just can't express it in a traditional way. I just hope my daughter is as productive and understood as you are, as an adult with autism. You seem pretty high functioning to me!

Quoting kajira:

On the ADOS test, I score almost as many points as possible, yet if I didn't tell most people I was autistic, they'd just think i'm a nervous, quirky person with out realizing that i'm not actually nervous, the traits they see in me are.... autism in an adult who learned to function and hide it pretty well.

Functionally, I do okay - but trait wise, i'm about as autistic as you can get score wise.

I don't know how they'd label me. I have classic autism, and they made it so it just said ASD and explained how I met the criteria if I ever wanted disability. (Which, I didn't persue. I got it for peace of mind and so I could understand myself better and explain my quirks to others who work with me like doctors.... It changed my life to be able to say I'm not anxious, I'm autistic and need you to be patient with me if I get flustered or process slower than they'd expect a semi intelligent verbal woman to process information.)

Stuff like that. It does effect my life - but I wouldn't change who I am.

If they'd diagnosed me as a kid, i'm pretty sure they never would have believed i'd be the person I am today. I know that growing up, pretty much everyone thought it was a success if I didn't follow in my mom's footsteps and become a drug addict.... so, the bar wasn't very high for me when I became an adult I guess.

I did mature slower, but my life partner didn't mind my "child-like" quirks - because I was intelligent, and capable, even if there were areas he had to be patient with.

As an adult - my verbal spoken language skills are not as good as you'd expect for what I can express in written words.... I'm hit or miss if i'm understandable to people who don't know me.



Living with Autism - The quirky kitty.

Our autistic Family - A Dad's point of view on living with Autism

JTMOM422
by Brenda on Jan. 1, 2013 at 9:16 PM

In a few months it will all be called ASD. There will no longer be PDD NOS or aspergers. They will all be the  same  my ds was given PDDNOS because he didn't have all the autism traits. But under the new criteria he will be ASD. 

I have often wondered what people meant by low to moderate or moderate to severe. I mean what is considered low or moderate. Is there a scale to go off of. Please let me know

Bluerose1482
by Bronze Member on Jan. 1, 2013 at 9:24 PM
1 mom liked this

I sometimes refer to my son's age and diagnosis when I reply to questions asked by others because austism is such a spectrum, there is a world of difference between my vocal 9 year old and a non-verbal 3 year old.  And many times the OP posts something vague like, "Help my son is autistic and keeps hitting his sister.  Does anyone have any suggestions?  What has worked for you?"      It really isn't because I'm making a big deal out of it or trying to 'rub it in' or be insulting towards anyone. 

Also, I can tell you that their mild, moderate, high-functioning all pretty much a load of crap.  My son is diagnosed with Asperger's, but he was diagnosed at 7 1/2.  If he had been evaluated at 3, I PROMISE he wouldn't have that diagnosis.  We have come a million miles from where we were.  He always did say enough words for his language development to be considered normal.  BUT he frequently went days without saying anything--not a word, and a good bit of his vocabulary was stuff that he memorized and repeated back--stuff that had no meaning to him out of that context.  IE  At 3 years old he could repeat the first 4 pages of "The Polar Express", and he could repeat parts of his favorite movies.  His ped 'counted' all those words towards his word count and insisted that was normal language development, but those weren't words that he ever used out of the context of directly quoting the movie or book.  He also didn't use 'words' to communicate his wants and needs as a toddler.  He led me around by my finger pointing or brought me a cup when he wanted something to drink or brought me a can of soup if he was hungry and wanted soup.  He screamed and cried ALOT. 

I can also assure you that there is NO WAY he would have tested with a normal IQ at that age (and that is one criteria for a diagnosis of Asperger's).  He knew things, but between being 'uncooperative' and his inability or unwillingness to use words to communicate, he didn't display what he knew. 

I'll never forget when his preschool teacher called me in and said that he 'failed' the end of the year assessment and they recommended that he repeat 3 year old preschool.  They were supposed to know their numbers to 10, basic colors, basic shapes and most of their letters.  So she pulls out a flash card with the color black on it and she said, "What color is this?"  Well, he didn't answer.  She pulls out a flash card with the number 3 on it and said, "What number is this?"  He didn't answer.  She pulls out a card with a "T" on it and asked, "What letter is this?"  Again he said nothing.  He entire test consisted of 'flash cards', and he had not named even made an attempt to answer even once.  She looked at me and said, "I really don't see how you can possibly think he's ready to move on....."  I asked her for a paper and some colors.  I asked my son to draw a black train, which he did.  I told him to put a blue "6" on it, which he did.  I told him the train's name was Tom and asked him to write it.  I spelled "T" "O" "M", and he wrote all three letters. 

So, while there was no doubt in my mind that he knew things, there was really no way that you could 'test' him per say and get an accurate picture of what he knew.  So, believe me, I know where you are comming from feeling frustrated that her diagnosis is based on a little snippet of time and what she was capable communicating at that time.  Just keep in mind that she is able to get services that a child who tests better wouldn't be able to get.  My son is completely mainstreamed with no support services related to autism at all.  (They read stuff to him because he's dyslexic.)  There are some things that he would benefit from (like occupational and speech therapy), which the school will not provide because he is diagnosed with asperger's instead of autism. He isn't eligable to resource services or even a shared para-professional--let alone a one-on-one.   

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