Not sure WHERE we belong...

Avatar for 235799
iVillage Member
Registered: 04-02-2003
Not sure WHERE we belong...
4
Wed, 01-25-2006 - 9:28am

Hello-Im just dropping in to ask a few questions. Im not sure WHERE we belong.

My 4 1/2 y/o son-who has a twin brother-has me concerned-theyre very vague concerns. His preK teacher brought to me similar vague concerns. So, I took him to a neuropsychologist for testing and evaluation.

The doctor danced around the idea of PDD but did NOT officially give him this diagnosis. In fact-she gave ME the OPTION to use it or not. HUH? he either has it or he doesnt. I opted NOT to use it! She DID say he has an expressive and receptive language delay and recommended speech and language therapy. Which we prompty initiated.

Ive read somewhat on the subject and he just doesnt fit neatly into PDD however he is VERY quirky, often seems difictuly to get his attention, keeps to himself, and on and on. I was SHOCKED at his test results. I though he was a very bright child. He tested 2 years behind on some things. He has trouble with simple concepts: before/after, first/last, one/all, etc. AND I was SHOCKED also to learn that he DIDNT know where his FOREHEAD was!!! (WHERE have I been???) Conversations with him are VERY confusing. They often make NO sense at all! And one of MY biggest concerns will NOT listen to a story and has NO story recall when one is read to him.

His strengths are that he is a very loving, very social child. He has GREAT memeory skills. Has great attention to subjects HE is interested in. A "real delight" as his doctor put it.

His hearing and eye sight has been tested to be within normal limits. also FYI-his twin brother has none of these traits.

I just wish I understood more clearly WHATS going on with him. DOES he have PDD? Or is he simply a FOUR year old boy who is developing at his own pace. Am I making a mountain out of a mole hill? Or does he REALLY have something going on?? Im SO confused. any advise or words would be MUCH appreciated. Thanks, L

iVillage Member
Registered: 03-31-2003
Wed, 01-25-2006 - 10:35am

I'm no expert, but my 4 y.o. DD has PDD-NOS, and some of your son's quirks sound very familiar to me. The difficulty with concepts like before/after etc. -- my DD has that too; those concepts are pretty abstract, and kids on the spectrum tend to be much more comfortable with concrete things. So, for example, my DD taught herself her numbers and letters before the age of 2, but even now at age 4, if you show her a face and ask her if the face is happy or sad, she really doesn't have any idea. Kids on the spectrum also tend to have a hard time generalizing -- so if a particular thing is "first" in one instance, it might be tough for them to figure out that it can be "last" in another instance. (Does that make sense?)

It's also not surprising that he has a tough time listening to a story, particularly if he has problems with receptive language. My DD does much better when she's holding the book, turning the pages on her own -- the tactile input helps her to digest the story. But like your son, if she's sitting in a circle listening to a story, she has a really tough time taking in the language and most of it goes over her head. Usually she just phases out and does her own thing while the story is being read. (We learned this the hard way when I tried to take her to a library story hour when she was 3!)

Like I said I am NO expert! But you might want to do some reading on Asperger's as well as Nonverbal Learning Disability. There's a book called "Quirky Kids" by Klass and Costello which gives really helpful, basic definitions of the various spectrum disorders, and I think you'll find that there's a lot of overlap between the disorders and a LOT of gray area. IMHO, the diagnosis itself is less important than getting the appropriate help, so the fact that your son is already getting speech therapy is fantastic. If you do want a diagnosis (and many people find that the diagnosis is helpful in terms of gettting all the services the child needs), you can always go to a different doctor. My DD got her dx from a developmental pediatrician, for example. But I've found that I haven't even had to use the dx -- she's getting all the services she needs through the school district right now.

I'm sure that others on the board will have more advice for you -- I'm pretty new at all this myself so I don't have a ton of experience! But I will say that you should trust your instincts on this, and pursue the dx if it's going to make you feel better and more in charge of what's going on.

HTH!

Jennifer

iVillage Member
Registered: 03-27-2003
Wed, 01-25-2006 - 12:14pm

Look up the criteria for PDD/aspergers and see for yourself if your son fits it. Here is the criteria---------

3. The DSM IV criteria for the autistic disorders

The full diagnostic criteria for the pervasive developmental disorders are outlined below. As mentioned above, the diagnostic criteria for the autistic (PDD) disorders are defined by the DSM IV criteria.

Childhood autism
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity
Qualitative impairments in communication as manifested by at least one of the following:
delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
stereotyped and repetitive use of language or idiosyncratic language
lack of varied spontaneous make-believe play or social imitative play appropriate to developmental level
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
persistent preoccupation with parts of objects
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.

Asperger's syndrome
Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity

Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
persistent preoccupation with parts of objects

The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
There is no clinically significant delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

PDD NOS
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes "atypical autism" ? presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

iVillage Member
Registered: 02-24-2004
Wed, 01-25-2006 - 12:55pm

Welcome to the board. My son, Nathan (HFA 7yrs old), also has expressive and receptive language delay, anxiety, and sensory issues. He was dx'd when he turned 5. But being on the spectrum also involves behavioral issues as well. Does your son play with his peers? Not his brother or close family, but other children. Is it parallel play? Does he interact with them? Does he get fixated on things too? Repetitive behavior? Does he have any sensory issues? (common with children on the autism spectrum). Your sons traits are similiar to Nathan's, so I do see some red flags.

I agree with the other posters. Definitely do your research. I would also get a second opinion. And I would also be concerned about your ds, so don't feel like your making an issue out of his quirky behavior. Trust your instincts and follow your heart. Nathan was dx'd by a neuropsychologist, but developmental peds can also dx.

michelle

Avatar for 235799
iVillage Member
Registered: 04-02-2003
Thu, 01-26-2006 - 11:22am
WOW Ladies! Thanks for your words. They really help. It looks like I need to read, read and read some more to understand where exactly my son falls. and to learn more about PDD. Thanks for the Autism criteria. Ive printed it and will see which traits he has or doesnt have. This is all so heart breaking at times. Other times I guess Im grateful that we've got something manageable to deal with. Things could be so much wrose. Counting my blessings. Thanks again for your words. L