Ok here's my story..

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I'm new on here, usually I post in the Children with ASD board. I'm a parent of a child with autism. My son just turned 5 years old and was diagnosed with pdd-nos almost a year ago by a neurologist/developmental pediatrician after 3 one hour long sessions in the course of 4 months. When he was born I did see little quirks about him. He had horrible fine motor skills, couldn't open a jar, twist a knob etc. He also couldn't jump with both feet at the same time. When I held him he would just be limp and not hold me back. He started lining cars up at 1.5 years old. Then it was cds and then books. But he talked and walked on time so I was never worried. When my son was 2, I had a daughter. I remember when he first said, "she's soo cute" and smiled at me. That was the first time he said anything about anyone else besides what he wanted or needed. I realized that when I held her I can feel her little fingers holding me back, something my son never did. She also nodded! He never did that. At 1 years old she would follow two step directions and he couldn't at 3. At 3 was also when tantrums began. I thought I was working too much. I told my boss I needed to change my shift and worked less so I can be around my kids more. The tantrums gotten worse for no apparent reason. His speech also became repetitive instead of conversational. He had a big vocabulary but didn't know how to use it. Everyone was telling me to get him checked out. Well to make the long story short, he was diagnosed with pdd-nos. He started speech and occupational therapy and now attends a special inclusion pre-school. He's doing really well and has made great strides, with still some daily struggles of course, but overall a huge improvement. His OT hinted to me how she felt his dx wasn't fitting for him. I then got him re-evaluated by a child psychologist. She saw him for about 1 hour. She specializes with children on the autism spectrum. Right away she dx him with asperger's. I said he was classified as globally delayed in speech. She said because he spoke at the right developmental stage and because of other things about him, she feels that he fits in the asperger's dx best. His neurologist does not agree. I know my son will continue his treatments regardless of his dx but as a parent, I feel like I should know exactly what is the right dx for my son. Does anybody have any input on my situation?

The problem is that the various diagnostic categories are not cleanly separate. There is tremendous diversity within the autism spectrum and there are many that are somewhere in between diagnostic categories.

My son is a lot like yours. He met all of the language milestones -- babbled at 6 months, used several words at 1 year, knew 65 single words at age 2 and would occasionally use two word sentences. At 3 he knew the name of virtually any common household object and was using short phrases of 3 to 5 words.

Yet, I was concerned that his motor skills were poor and I worried that his speech was not as understandable as it should be. So, I got a speech evaluation. To my astonishment, it turned out that he had a fairly significant receptive and expressive language delay. After about 9 months of speech therapy, his receptive and expressive language were were average.

At age 4 he was diagnosed with PDD-NOS. This was the diagnosis because it was clear that he was on the autism spectrum even though he didn't quite fit all of the diagnostic criteria for Asperger syndrome or autism. At age 6, I had him re-evaluated by a different psychologist and she felt that Asperger syndrome was the best description of him. Even today, I'm sure some psychologists would disagree.

Supposedly, the difference between high functioning autism and Asperger syndrome is that children in the former category have a language delay but those in the latter category do not. For example, here are the diagnostic criteria for Asperger syndrome in the DSM-IV:

You will notice that the diagnostic criteria say "There is no clinically significant general delay in language
(eg: single words used by age 2 years, communicative phrases used by
age 3 years)." The trouble is that a 2 year old that only knows single words actually has a fairly significant language delay. So, the DSM-IV diagnostic criteria actually contradict themselves! (The trouble is that psychologists have learned a lot about language development since the DSM-IV was written.)

There is also the fact that the diagnostic criteria for AS say that the diagnosis should be given only if "criteria are not met for another pervasive developmental disorder". Well, if you really take that literally, it is impossible for ANYONE to be diagnosed with AS because you can't meet the diagnostic criteria for AS without also meeting the criteria for "autistic disorder". (The DSM-IV diagnostic criteria for "autism" don't absolutely require a language delay).

There is also controversy about whether high functioning autism and Asperger syndrome are really different after all. Many persons diagnosed with autism have normal IQs and eventually catch up in language. At that point, it's not easy to see how someone with AS is different from someone with HFA. There are papers that report differences, but some psychologists do not think those differences are important enough to warrant separate diagnostic categories. Some, like Tony Attwood, would like to simply dispense with "high functioning autism" completely and use AS to refer to anyone on the autism spectrum that has a normal or above normal IQ.

So different clinicians handle this situation differently. Some take the position that Asperger syndrome should only be diagnosed when there is no language delay. Others are willing to diagnose Aspergers if there is a language delay if the child uses single words at age 2 and communicative phrases at age 3."

Most likely the language problem with my son was fairly specific -- I think he simply had a delay in acquiring the rules of grammar. So, he learned words as fast as anyone else does (even abstract ones), but was slow to learn the difference between "Elmo is chasing Zoe" and "Zoe is chasing Elmo".

So, the short answer is that the diagnostic categories in our clinical manuals do not adequately cover the diversity of real human beings. Most likely, as your son develops, he will reach a point where he most closely resembles a particular diagnostic category, and you can think of him that way. At 7, "Asperger syndrome" describes my son better than any other diagnostic category so that's what we use.

Ultimately, diagnoses are just tools that we parents use to get particular services that help our children. The particular label they use is less important than getting the services your son needs. It can actually be helpful to have both PDD-NOS and AS diagnoses because you can use whichever one gets your son the services that he needs.

I suppose the best answer is that your son is his own unique person -- the label you give him is a tool you use to help him. Nothing more.

I wouldn't worry about the particular name of the diagnosis right now. In the DSM 5 they're getting rid of PDD-NOS and Asperger's and I think the new term will just be high-functioning autism.

Right now, depending upon where the professional was taught, either term could be used to describe the higher-functioning end of the spectrum. I know I am diagnosed PDD-NOS by TEACCH but if I went to Tony Attwood he would diagnose me with Asperger's. Just don't worry about it.

Thank you both for your reply. Rudolfsdad, I agree, my son sounds very similar to yours. My son had a huge vocabulary at age 2, he knew how to say single words at 1 also. He just didn't know how to use them to communicate. I couldn't talk to him on the phone or say, "how was your day?" He is starting to know how to communicate the words he knows through speech therapy. He still stutters when trying to talk about his feelings or thoughts but he has gotten so much better. Sometimes I think the speech evaluation is not a fair representation of the child's speech abilities. The speech therapist would ask my son.."point to the girl that is sitting besides the dog." My son has a problem related to autism where he only hears part of the sentence (I don't know what the term is) so all he hears is "dog" or "girl" and then he naturally points to what he heard. Of course he did awful on the test lol. The only thing that saved him was his vocabulary. He was also very awkward and was really nervous talking to this stranger. My son resembles a lot of the asperger's characteristics, for example he has horrible handwriting, loves letters, clumsy, wants friends but don't know how to make them, has average or above average intelligence, he can count over 100 because he can see patterns in numbers, hate breaking or bending rules, perfectionist. I never felt like he was like other autistic kids, I know they are all different but it's hard for me to compare him to my boyfriend's nephew who has classic autism. He is completely in his own world and very hard to engage. Like you said, it doesn't matter what his dx and I will continue being an advocate for him and fight for the services he needs. I guess from my issue is..I want to know how he will be as an adult. I know a dx is no indication of that and every person is different. However, I would like to know how he will do in high school, will he go to college, will he have a job, get married have children, live on his own?? I guess I just have to take it one day at a time. ..

Well your son does sound very high-functioning, even at an early age, so I really wouldn't worry too much. When my son was a year and a half old and he wasn't walking or talking yet, we had all kinds of worries that he was mentally ret*d, he would never hold a job, he would never be able to live on his own. But we got a lot of early intervention and I see improvements in him each and every day. He's now only "mildly" autistic, and I really think when he's an adult he'll be able to do all the things other adults are able to do.

I think with a lot of kids on the spectrum, they do end up hitting the milestones, just a lot later. Maybe he won't figure out dating, living on his own, or holding down a job til he's 20, 25, or 30. Everyone is different. Other things he might never get. I wasn't taught about empathy until I was 19, and I still haven't experienced it.

My worries now, as a parent, is how the other kids will treat my son. I worry a lot about how he'll be accepted, whether he'll be bullied, if he'll suffer from depression and despair. But as for whether he'll go to college, get a job, and live on his own, I don't worry about those things anymore. If they don't happen at 18, they will happen eventually.