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

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
Replies (11-17):
by on Jan. 1, 2013 at 9:29 PM

when my son was diagnosed they said he was PDD-NOS aspergers. Now if people ask, I just tell them he is HFA. it makes it easier because I don't want to into a long explanation. especially with who do not understand.

by on Jan. 1, 2013 at 9:52 PM

I like how you explain that. I don't mean to insinuate that you or anyone else were rubbing it in or insulting by stating that. I do feel there is a divide somehow, and its not easy to put my finger on. I just really hate labels, and I think some parents cling to those words "high functioning" all too much. I don't want to insult you either :)

Thanks for sharing your story.

Quoting Bluerose1482:

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.   

by Silver Member on Jan. 1, 2013 at 10:11 PM

I can relate to what you're saying. I have encountered many parents that when they hear autism, the first thing they say is oh, its asperger's then. It's like another clique. The football team example, parents want their kids to be the quarterback, receiver or cornerback. Who wants to gloat about having the halfback or linebacker.

I remember how annoyed I was when I heard PDD nos. It literally means, a little of this, a little of that, we don't know. I told them, my son has told me that he wants to be a Navy SEALS, so whichever diagnosis doesn't disqualify him is fine by me.

I believe that kids move along the spectrum depending on therapy, diet, even seasonal changes. My son started off very low-functioning, non-verbal, extreme echolalia... 2 1/2 years later, he's moderate and his communication which was nonexistent has improved significantly.

I honestly think of them as the kids that are catching up developmentally. Its just a hard puzzle to figure out unless you go through process of elimination.


by Gold Member on Jan. 1, 2013 at 10:45 PM
1 mom liked this

I understand what you're saying and can empathasize and I try to emulate your attitude. Its an awesome attitude to have :)

I don't know if parents want to make a big stink out of "high functioning". I for one, think a dx of anywhere on the spectrum, can be hard to take. Day to day can still be tough, anywhere on the spectrum. We have more in common than not in common.

So I'm always so super happy to see my kid doing his next accomplishment and hearing all the moms telling me their kiddo's accomplishments -- no matter where they are on the spectrum, you know?

by on Jan. 2, 2013 at 8:18 AM
My son was dx as moderate to severe. At timr of testing he was non-verbal completely.
Like you said it has allowed for him to receive more ABA hrs.
by on Jan. 2, 2013 at 8:31 AM
3 moms liked this
My now, 18 year old was diagnosed with moderate autism, PDD/NOS at age 3. At that time he had very little language, plenty of meltdowns, was not potty trained yet, made no eye contact and was obsessed with trains, along with other typical autistic behaviors and habits. He has come a long way with help from speech therapy, ABA, occupational therapy, and special day classes throughout his educational years. He is now in adult school for special needs adults where he is learning things like how to cook , do laundry, take public transportation (which I doubt I'll ever let him do), job training and a few academic classes.
His speech is and probably always will be a little behind. He still has problems understanding conversation if the subject is unfamiliar or it goes too fast. He is a fantastic reader but comprehension is low. He can take care of most of his needs on his own. He does not want to drive. He may someday live on his own but will need assistance. I plan to keep him with me as long as I can and am capable of caring of taking care of his needs. I am an older mother. I had him at 40.
He has a training job he goes to on Fridays. He hasn't had a paying job yet. The schools have only given him janitorial type jobs. I think he has much more potential and ability but that's all they've offered him so far. He says he likes his job so I guess I should be grateful for that.
My son is very intelligent, has eye contact now, very verbal but still has no friends and does not want any. He is very happy and content with his life. We go to church every Sunday to attend services and help out in childcare. Most people we come across cannot tell right away that my son has autism. It's not until they engage in longer conversations that they notice something is different about him. He is a wonderful, beautiful blessing to my life! God doesn't make mistakes and I love him just as he is and would not change him for the world!
by on Jan. 2, 2013 at 1:01 PM

My son has autism 299.0 basic not high functioning just straight autism. I feel its harder to explain he is more severe because everyone else points out how high functioning they are lol

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