3 yr old PDD-NOS new diagnosis

[mrforbes]

Hi,

our DS just got diagnosed with PDD-NOS. I have a couple of questions. First, when they were doing the evals they stopped scoring the standardized tests because they felt the quality of his evaluation was stronger/higher than his scores would have been. I guess in my understanding it seems they give the PDD-NOS when kids are younger but it often just becomes an autism diagnosis when they are older AND at the same time PDD-NOS is an autism spectrum disorder so it seems like I could say he has autism if I had to say something (and I have read that PDD-NOS is sometimes referred to as 'atypical autism')

Any insight?

Also, any book recommendations? I was at the bookstore today and almost bought a book about autism spectrum disorder but couldn't tell if it applied to PDD-NOS because it only mentioned it 3 times in the index.

Thanks!

[christinelin]

I think you can definitely say your DS has autism or PDD-NOS. Most people are more familiar with autism, so that can be easier than trying to explain PDD. My son has Asperger's Syndrome and I sometimes say he has autism or that he has an autism spectrum disorder.

Someone with PDD-NOS might eventually get either an autism diagnosis or an Asperger's diagnosis as they grow older. They can present as more subtly affected than someone with autism proper or as significantly affected, but missing something for a full-blown autism diagnosis.The books that address autism should be appropriate for you. I like Overcoming Autism, as a balanced, positive overview. You likely won't find things specifically on PDD-NOS.

How are you doing with this?

[Emmeline II]

PDD-NOS | Autism Speaks

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.

My nephew is 15yo and still has a PDD-NOS diagnosis because his symptoms don't fit any other diagnosable condition. As your son is only 3yo a lot can change between now an 7yo--it may be that the evaluators are "conservative" with Autism diagnoses, or that his symptoms really don't fit any particular category at present.

Anyone whose child has had a similar eval will probably know what you mean; though could always tack-on that he is on the spectrum for clarity. As far as reading/therapy, though ds wasn't given a definitive Asperger's diagnosis his evaluator said that shouldn't stop us from pursing a therapy we thought would be helpful.

Did you get detailed results? Specific therapy and/or reading recommendations?

What Is PDD-NOS - PDD-NOS and Autism

[mrforbes]

We're going to be doing occupational therapy, speech therapy, a rehab play group focusing on speech or ot stuff or an inclusive preschool for a couple hours 3x a week plus some parent thing where we work on what we can do for at home stuff. It was recommended that we do some feeding therapy but we're waiting on - it's agreed his sensory issues are sort of the root of that issue and I just would rather focus on the sensory stuff in other ways than food since we have to think of food all the time with his allergies and it's already so limited. He might do some autism day programs in future but the current class is at a different level than him I guess.

The problem with the inclusive preschool is that DS is very allergic and they're not really comfortable taking him yet because he's the most allergic kid they've ever had and he doesn't say anything about how he's feeling if he's starting to have a reaction.

My sense was that they are a little conservative with the under 5 set, but they also couldn't see everything they wanted because he wouldn't do it. They also didn't do any thing with him and other kids, we started the educational eval through the school district and they did observe him with kids but we haven't finished that eval yet since they're back logged from the summer. His language scored really low, his receptive language was the bottom 1 %, his expressive language was higher but still far below the bottom of the 'normal' range. He has a lot of sensory issues (depends on input but low registration, sensory avoiding & sometimes seeking, as well as sensitive) and he does some things like flap his hand while talking, spinning, tapping his hand over his ears when stressed, most of his talking is stuff from books or his favorite show, has echolia and so on.

I'm doing ok, just kind of confused and trying to figure this all out! It's also just akward because I don't really know how or if I want to let people know but when people ask what we've been up to lately (which has been endless paperwork, evals and therapy) I don't really know what to say. We moved here about 6 months ago so I still feel like I'm unpacking the house and trying to get around. DS is such a wonderful person it's just hard to hear about how low his language is (we've really seen it blossom in the last 6 months!) and we know he's very smart. I do wish for his own sake he was better at reading social situations.

Also, I forgot to mention this originally but it's a reason I logged on: sibiling tips? We have a 7 month old as well and right now he gets a lot of physical me time since he still nurses and I wear him, I'm just trying to be aware of still giving him time and energy. He adores his older DS and is starting to try and play with him which isn't going very well with DS. But already I know many of our afternoons will be devoted to doing things with DS and he's already been to most of these evals with me and the OT. Is there a balance to be struck with siblings?

[KCMichigan]

I will say the PDD_NOS may or may not stay with him as he ages or it may morph into a different, yet more appropriate dx as he and his needs change over time.

One of my DDs had a PDD_NOS dx at 3. She was struggling daily to cope and it opened up services to her.(she also had a few other dx) We did OT, PT, feeding therapy, and sensory diet/auditory training. Looking on paper (and back from 3 yrs later) it was intense and a lot of intervention. She had an IEP as well.

BUT now at age 6- she is quirky, but would not likely get a dx of PDD_NOS. She has developed fantastic language skills (before a lot of high vocabulary and receptive, by expressive was echo-y or sometimes inappropriate), good coping skills in place, and she has learned how to work through some of her anxieties.

Is she still atypical. YES. We could be looking at an Asperger Dx down the line- but she is in a 1st grade classroom and doing well.

As far as books: I read a lot of books- read through and take what you like from each. Going through a wide variety of books will help you form a solid idea on what works for you and your family vs a single book.

Sometimes if people asked- I would say yes, she has a PDD_NOS dx. You would be surprised at how many people ask because they may see similar behaviors in their own children and are seeking information on how best to help them or find resources.

As per the allergies- have you seen an allergist? Both my DD had terrible allergies, excema, asthma. We did allergy shots and as nasty as they were- they really made a big difference for our family at least.

I know that our school does snack checks for allergies (there is a severe peanut allergy in the class as well as a topical dairy allergy). This is with Elem. level. In our preschools it was even more cautious since kiddos were not always familiar with what they are allergic to and how they react. Some reactions are so fast and/or kids dont recognize them.  Have you talked to the school? Would they have a one on one or a nurse work with him? I only ask because the school preschool program was one of the BEST therapies for my DD. OT & PT came to her, she had peer models, and a fantastic teacher that really worked with her. For us, at least, it was one of the best things we could have done for her. It was a part time program, but really made a big difference. Her communication skills and social skills took a giant leap forward. Group skills/social dynamics are so different than one on one therapy or adult-child therapy. 

Edited by KCMichigan - 9/22/11 at 10:43am

[Linda on the move]

A really great book to start with is Quirky Kids by Klass. http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430/ref=sr_1_1?ie=UTF8&qid=1316721569&sr=8-1

It is about PDD-NOS and other, closely related diagnosis such as Asperger's, Sensory Processing Disorder, etc. It starts with basics about evaluations and the various kinds of professionals and therapies, and goes on to talk about quirky kids at different ages and stages. I really love this book because it feels like a hug from a friend who's BTDT to me.

(My DD used to have the label PDD-NOS but eventually her label changed to Asperger's. She is now in high school )

Sibling stuff is tricky. Eventually, as you guys move toward preschool and such, you may have a little more one on one time with your baby. I don't feel that I've done a great job at the sibling part of this.

My older DD is the one with sn, and my younger DD is closely spaced. There have been a lot of times when I felt like I was really not giving her what she deserved from me. None the less, she has thrived and everything in life comes easy to her.  She has been able to help her sister in a lot of social situations and it's possible that my older DD does as well as she does because of being able to tag along with her little sister some of the time. My younger Dd, the neuro typical one, is one of the sweetest kids on the planet and is really amazing and patient with other kids who are different when she is at school. She is very pretty and popular, and has been able to be a really positive influence on her "cool" friends. It's all worked out OK for her -- even though at times I felt like I wasn't doing nearly enough for her.

Peace

[heatherdeg]

My 7-1/2yo was dx'd PDD-NOS at 3yo but he had already had 2 years of INTENSIVE therapies and nutritional interventions under his belt (we started with suspected cerebral palsy at 9mo).  At 7-1/2yo, they don't know if he's ADHD or Asperger's or both or still PDD-NOS (we haven't had a formal eval redone in a few years).  He ABSOLUTELY has some seriously Asperger's traits--the most disturbing is his complete lack of... I don't know what the word is.  But if someone hurts him or is mean to him, he doesn't stay away.  In fact, he actually tries HARDER to be WITH those people.  It's really getting difficult to manage because he's been seriously bullied twice (and we homeschool--so don't let people tell you it's just a school problem).

I usually just say that "he's in the autism spectrum".  Because it's NOT autism, it's in the same family (which is "the autism spectrum").  And really, that means you don't have to change what you're saying over time if the diagnosis changes within the same family of disorders.  Not to mention that I have a really hard time saying my son has autism when he is not nearly as severely as affected as a truly autistic child.  I feel like I'm minimizing the struggles that parents/families of truly autistic children are dealing with.  Yes, we DEFINITELY have our share, but the extremity is different and I recognize that.  And I respect them.

[FarmerBeth]

Originally Posted by heatherdeg 

My 7-1/2yo was dx'd PDD-NOS at 3yo but he had already had 2 years of INTENSIVE therapies and nutritional interventions under his belt (we started with suspected cerebral palsy at 9mo).  At 7-1/2yo, they don't know if he's ADHD or Asperger's or both or still PDD-NOS (we haven't had a formal eval redone in a few years).  He ABSOLUTELY has some seriously Asperger's traits--the most disturbing is his complete lack of... I don't know what the word is.  But if someone hurts him or is mean to him, he doesn't stay away.  In fact, he actually tries HARDER to be WITH those people.  It's really getting difficult to manage because he's been seriously bullied twice (and we homeschool--so don't let people tell you it's just a school problem).

I usually just say that "he's in the autism spectrum".  Because it's NOT autism, it's in the same family (which is "the autism spectrum").  And really, that means you don't have to change what you're saying over time if the diagnosis changes within the same family of disorders.  Not to mention that I have a really hard time saying my son has autism when he is not nearly as severely as affected as a truly autistic child.  I feel like I'm minimizing the struggles that parents/families of truly autistic children are dealing with.  Yes, we DEFINITELY have our share, but the extremity is different and I recognize that.  And I respect them.

Our family, as well.  This is also how I'm increasingly seeing the kids I work with as a teacher's aide described, too, and my recently diagnosed son was given a generic "autism spectrum disorder" diagnoses, even though he would very definitely fall in the Asperger's description most accurately.  I've also been told that Asperger's will be removed from the DSM 5 (the upcoming diagnostic criteria for autism) as the medical community is aiming for continuing to use the spectrum model rather than worrying about individual terms.  And certainly, it's much easier than constantly revising a diagnoses, as Heatherdeg mentioned.  PDD-NOS is still in the spectrum, so it's enough to know what range of difficulties your child may be experiencing and tweak the individual needs from there.  When there's high functioning autistic kids who didn't speak until age four sometimes presenting more neurotypical and having higher social functioning by say , age 12,  than some of the kids labeled with Asperger's who never had any verbal delays or involvement, the labeling difference is pretty academic.  What matters is having a ball park idea and then treating for individual strengths and weaknesses from there.
 

[mrforbes]

Thanks so much! IDS has def. been in situations where he can't read that the people do not want him there and yet he tries harder to play with them! It's so hard esp. when they are seriously been inappropiate or down right hurtful physically and emotionally (he misses the hurtful part on both aspects somehow) I feel like his DX will change so I like the idea of just saying autism spectrum. If they remove Asperger's from the spectrum in the new DSMV how are they going to reclassify it?

We do have an allergist and have been seeing one for a while since his first serious er visit over allergies was at 10 months. The school doesn't have a rn nurse on staff, just somebody (can't remember her qualifications) who manages all the medications and what not for the students. They do publish they're snack menu so I think I could work with that but they aren't nut/peanut free or aware and have told me so a few times. Still haven't heard from them about scheduling any of this so I'm calling Monday, I feel like somebody has his file on their desk and they're trying to figure out where to put him.

[FarmerBeth]

Originally Posted by mrforbes 

Thanks so much! IDS has def. been in situations where he can't read that the people do not want him there and yet he tries harder to play with them! It's so hard esp. when they are seriously been inappropiate or down right hurtful physically and emotionally (he misses the hurtful part on both aspects somehow) I feel like his DX will change so I like the idea of just saying autism spectrum. If they remove Asperger's from the spectrum in the new DSMV how are they going to reclassify it?

We do have an allergist and have been seeing one for a while since his first serious er visit over allergies was at 10 months. The school doesn't have a rn nurse on staff, just somebody (can't remember her qualifications) who manages all the medications and what not for the students. They do publish they're snack menu so I think I could work with that but they aren't nut/peanut free or aware and have told me so a few times. Still haven't heard from them about scheduling any of this so I'm calling Monday, I feel like somebody has his file on their desk and they're trying to figure out where to put him.

Asperger's would be "autism spectrum disorder with minimal verbal deficits", or something approximate.