can a kid with PDD-NOS seem normal mostly?

[ktgrok]

My son has an appt with a neuropsych in a few weeks, but I'm reading a ton in the meantime. I'm particularly wondering if someone on the spectrum can actually be pretty verbal when they want, and also show empathy in certain situations? My son is SOOOO good with little kids. He's 11 and so gentle with toddlers and preschoolers when around them. He even helped teach a girl I was babysitting to read! And he lets the littles win at game when we are at homeschool events. So he is empathetic...and I thought people on the spectrum were not able to empathize?

 

He doesn't talk or make eye contact with strangers if he can help it, but does fine talking to other kids usually.

 

Katie

[NCW]

PDD-NOS is not a very well-defined diagnosis. I have met kids with this dx who are exceedingly verbal. Does your son relate well primarily to younger children? How does he do with same-age peers or children older than himself? Do you need a diagnosis for some reason?

[Guest]

The most recent research is leaning toward the idea that kids on the higher end of the spectrum -- PDD-NOS and Asperger's in particular -- have very intense emotions/emotional understanding and empathy which is many times overwhelming to them. For instance, as a very very young child dd registered the slightest shift in my expression or tone as absolutely huge and scary. It's not surprising that some kids would shut down in protective response.

 

Dd too is extremely affectionate towards me and her grandmother, mostly verbally but sometimes physically as well. She has always made good eye contact with me, so it took me quite a while, and someone else's comment, to make me realize this did not extend to others.

 

As scientists and neurologists understand the spectrum better I think they will probably find huge variations in degree of responsivity and social abilities even within one group like girls with Asperger's. So I wouldn't say what you have observed is a conclusive argument one way or the other, but part of a larger set of symptoms or behaviors to be considered together.

[Spellbound]

Well darn! That was going to be my big argument against a diagnosis. My DS is very empathetic with everyone, especially little ones. I was also going to tell them how I think he actually has a lot of intense emotions, but that sounds like that may bring a diagnosis as well.

 

What would be a good website for recent research?

[Guest]

You know, I read so much that I have no idea where I actually saw this; I only remember how deep a chord of acknowledgment it struck in me. I know I use Tony Attwood's web site and links a lot, and read many articles through the New York Times. I will try to google this topic in the next day or so and get back to you.

 

There is also anecdotal evidence in published stories by parents whose children were later diagnosed somewhere on the spectrum, and the difficulty they had in accepting those diagnoses because their kids definitely related to them, responded to their moods, made eye contact, pointed, etc. I'm thinking off the bat of George and Sam, by Charlotte Moore.

[Spellbound]

Thank you. It was Tony Atwood's book that made me say 'that's my child'. I have not checked out his website yet. I will go exploring..........

[Guest]

Here is a story about a study from Switzerland:

http://www.thestar.com/article/633688

[ktgrok]

We are looking into a diagnosis because of ongoing behavior and social issues. He has always been a bit "different", but it is at the point where I need to know if he is just being rude or if he really is trying and this is bigger issue. He doesn't answer direct questions if he can avoid them (with others, not me as much), he is ANGRY much of the time, and has tantrums still at age 11. There are other issues, but that is off the top of my head. i need to get to bed :)

[Guest momk2000]

My dd (9yrs) was dx'd with PDD-NOS and she is a chatterbox. She is also very kind towards the younger kids and pretty much gets along with everyone. But if things just aren't going her way, look out, major meltdown! She is also very much a perfectionist, so one missed math problem or spelling word and that just sets the tone for our entire day. She also has some physical awkwardness, which is really no too noticeable. Unless anyone has witnessed one of her meltdowns, she appears perfectly "normal", it is not obvious at all to others. Since her dx, it is now clear as day to me though.

[HeidiD]

My son has an appt with a neuropsych in a few weeks, but I'm reading a ton in the meantime. I'm particularly wondering if someone on the spectrum can actually be pretty verbal when they want, and also show empathy in certain situations? My son is SOOOO good with little kids. He's 11 and so gentle with toddlers and preschoolers when around them. He even helped teach a girl I was babysitting to read! And he lets the littles win at game when we are at homeschool events. So he is empathetic...and I thought people on the spectrum were not able to empathize?

 

He doesn't talk or make eye contact with strangers if he can help it, but does fine talking to other kids usually.

 

Katie

 

 

Do you think he has autism because of the eye contact issue alone, or do you have other concerns?

 

"The key defining symptom of autism that differentiates it from other syndromes and/or conditions is substantial impairment in social interaction (Frith, 1989). The diagnosis of autism indicates that qualitative impairments in communication, social skills, and range of interests and activities exist. As no medical tests can be performed to indicate the presence of autism or any other PDD, the diagnosis is based upon the presence or absence of specific behaviors."

 

http://www.autism-society.org/site/PageServer?pagename=about_whatis_PDD

 

A red flag is "substantial" and "qualitative" impairment in these areas, possibly due to impairments in cognitive and affective empathy. Simon Baron-Cohen calls it "mindblindness".

 

http://www.autismresearchcentre.com/arc/staff_member.asp?id=33

 

My daughter is very high functioning at this point and has always been very social (has had to learn not to behave intrusively, make excessive eye contact in social situations, etc.). She is the opposite of withdrawn, and by all appearances is a typically functioning person. But like opposite sides of a coin, mindblindness can lead a person to be either socially withdrawn OR as in her case, to suffer from an innate lack of understanding of social boundaries and appropriate social interaction (and thus hanging around with the little kids is preferable to her because they are easier to interact with).

 

Unless you are seeing this type of problem along with other DSM-IV behaviors in sufficient number required for diagnosis, I wouldn't necessarily assume he's on the spectrum.

[Verity]

Just wanted to pop in and share that my son with Asperger's is also very empathetic, especially with small children and animals. He's also very cuddly with me (and he's 12 now) and wants to be held and touched alot. The first time someeone told me they suspected autism it was his kindergarten teacher who he didn't like very much (she was kind of a cold person), she commented that he wouldn't make eye contact with her and wouldn't hug her and had meltdowns. I was surprised because he hugged his bus driver every day!

 

We recently got our diagnosis on paper - my son is very high functioning, gifted verbally but still has the mindblindness that others mention. He's funny and will talk to anyone but he hardly ever picks up on any body or facial cues - he doesn't ask or wonder how you feel about something he is discussing or even usually give you a chance to get in a word.

 

The physical clumsiness others mentioned is a major issue here as well as his need for intense physical stimulation. He also had meltdowns up until the last year or so. Now I see him regulating himself when he starts to cry. He's learning and it gives me great hope for him to be able to function in the world as an independent adult one day.

[sbgrace]

I think this site does a really great job of breaking down what it takes to get a pdd-nos diagnosis in plain language. http://www.bbbautism.com/diagnostics_psychobabble.htm Note that a child doesn't need to meet the specific number of criteria in each category for PDD-NOS like they do for a "straight" autism diagnosis and it's different than Aspie as well. That said, I think the diagnostic criteria are changing soon? PDD-NOS as it stands now is a "fits on the spectrum but not clearly enough for another diagnosis" or I call it "fits but doesn't" for my son. He's one of those extremely tuned in to the emotions of others and easily overwhelmed by the intensity. He's hyperaware really. I was told that's common on the spectrum. In fact I think one researcher was trying to work with parents to wear biofeedback bracelets to regulate their emotional responses and so help their sensitive kids. Babbling--sorry. But kids on the spectrum look very different and there is not any one thing that excludes a child.

[ktgrok]

There are a lot of other issues, but I don't know if they point to being on the spectrum, or to SPD, depression, something else...i just don't know. A few people that know him have hinted that perhaps he is on the spectrum, which is where my question came from. It had never entered my mind before, I just thought he was really stressed, all the time, and rude. I'm including a link to a list I made for the doctor. I'd be interested to hear what people think.

https://docs.google.com/fileview?id=0B-YygjxIGmm4ZDhlNWM2MmItNWNiNC00YTVmLWI5MmEtYWMxNzU4OTU0NmIz&hl=en&authkey=CObo6N0G

[Guest]

I don't think it's really worth your time to try to second-guess what diagnosis will come out of this, ahead of time. There are so many aspects of mild neurological disorders that overlap: sensory issues, visual and processing delays or quirks, anxiety disorders, attention deficits, depression -- all so intertwined.

 

But I'd say a spectrum diagnosis is definitely a possibility. There are many, many items in your list that are smack on what we experienced with my dd -- the aggressive anger only excepted. I was amazed to read about another child who runs and hides when upset or hurt; I thought dd was the only kid who would do that. I'd find her under a chair pulled into a corner behind a bed and draped with blankets... real hiding going on.

 

I am so very glad you're going to get an evaluation and at the very least some directions to turn for help. It sounds like your son is under a lot of stress and anxiety and so are you and your family. That is so very, very difficult to deal with day after day. Wishing you all the best.

[ktgrok]

I don't think it's really worth your time to try to second-guess what diagnosis will come out of this, ahead of time. There are so many aspects of mild neurological disorders that overlap: sensory issues, visual and processing delays or quirks, anxiety disorders, attention deficits, depression -- all so intertwined.

Good point. I think i was just so flabbergasted by the concept of a spectrcum issue that i wanted to prepare myself for that a bit. I honestly NEVER considered it, but I also never realized there was so much of a spectrum. I thought it was just autism.

 

 

But I'd say a spectrum diagnosis is definitely a possibility. There are many, many items in your list that are smack on what we experienced with my dd -- the aggressive anger only excepted. I was amazed to read about another child who runs and hides when upset or hurt; I thought dd was the only kid who would do that. I'd find her under a chair pulled into a corner behind a bed and draped with blankets... real hiding going on.

Yup...behind the bed under the blanket!!!

 

I am so very glad you're going to get an evaluation and at the very least some directions to turn for help. It sounds like your son is under a lot of stress and anxiety and so are you and your family. That is so very, very difficult to deal with day after day. Wishing you all the best.

Thank you for understanding. It really is exhausting. And honestly, I almost think knowing there was a reason for it would be such a relief, as opposed to him just being "bad."

[Guest]

And honestly, I almost think knowing there was a reason for it would be such a relief, as opposed to him just being "bad."

 

Actually, it is a relief as well as a shock. You then know there's a physiological, neurological reason for what your child does and it's neither him being bad nor you being a bad parent! And then you can also get help, which can be literally life-transforming for both of you.

[elise1mds]

My Aspie also loves animals and small children. We went to a new friend's house today. She has an 8-month-old son. DS loved sitting with him and experimenting to see which toy he would choose if two were offered, and I have seen that younger children are constantly drawn to him in other situations as well. I suspect it has to do with his emotional level being pretty darn close to theirs! ;) He is also very verbal when he gets going, though his comments are hit-and-miss when it comes to being pertinant to a conversation (unless he starts it). And he loves "his" cat Hermes, who is 50% cat, 50% mountain goat, and 100% mischief. Even with PDD or Asperger's or any diagnosis, the kid is still an individual! It's just easier when you know how their brain works :)

[HeidiD]

There are a lot of other issues, but I don't know if they point to being on the spectrum, or to SPD, depression, something else...i just don't know. A few people that know him have hinted that perhaps he is on the spectrum, which is where my question came from. It had never entered my mind before, I just thought he was really stressed, all the time, and rude. I'm including a link to a list I made for the doctor. I'd be interested to hear what people think.

https://docs.google.com/fileview?id=0B-YygjxIGmm4ZDhlNWM2MmItNWNiNC00YTVmLWI5MmEtYWMxNzU4OTU0NmIz&hl=en&authkey=CObo6N0G

 

I read your list, and I think he could be on the spectrum, but various behaviors could also be caused by SPD, depression, anxiety (or he could be on the spectrum and have other things going on along with that). I suggest you find a highly experienced child psychiatrist who specializes in the above issues, because with the family background of depression, etc., it will likely require some expertise to sort it all out.

 

Good luck! :)