Greenspan’s Dx of My Son... | Autism PDD

I took my son to a psychiatrist who thought the ASD label was wrong and said he had SID.  However, my son was an "easier" infant so I'm not sure I bought into the regulatory problems as being the sole issue.  You should definitely stick around - the issues you face are the same as many of us face, regardless of the label! 

I'm also interested in how you got on Dr. Greenspan's schedule....

what's the difference between a regularatory disorder and an ASD, espeically if a child with a regularatory disorder meets the critieria for an ASD diagnosis? 

This is what I found on regulatory disorders:

Children with regulatory disorders often have difficulty establishing appropriate sleeping and eating patterns, are unable to calm or console themselves, and may overreact to environmental stimuli. Georgia DeGangi states that "disorders of regulation appear to be based on problems associated with sensory processing, communicative intent, state control and arousal, and modulation of emotions" (DeGAngi, 1995). The infant or child who is very irritable, difficult to soothe, emotionally labile, and hypersensitive to touch or other sensory input may have regulatory problems.

http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm

Sunflowers - I think it would be great if you stuck around on this forum. 

Ok how in the world did you get in to see him. I would love to take the boys to him. I have a feeling he would tell me the same thing. Where is he anyway if you don't mind me asking and was it something insurance covered.He is not ASD.

Instead, my son has sensory integration disorder and some regulatory disorders.

This was Dr. Greenspan's diagnosis. He was the final arbiter for us after one and a half years of wondering what he has and seeing countless other professionals.

My son sometimes did not respond when called. He also obsessed about fans. He sometimes stared at lights and flicked the light switch off and on. So, to me, he appeared to have ASD traits.

Greenspan said not true. He said someone who does not understand regulatory disorders well will confuse ASD with regulatory disorders. His office feels there may be many misdiagnosis walking around right now - children who are not ASD at all but instead have regulatory disorders, children who do not have ADD or ADHD but instead have regulatory disorders.

I tell you, the man is brilliant - and that's aside from his educational credentials. He was a keen observer, extremely articulate, and it is very obvious he cares for children alot. In a short period of time he was able to pinpoint exactly why my son is not ASD. He said he was warm, affectionate, smiling when someone looked or talked with him and this is just one reason.

Regulatory disorders are still something my son will have to learn to overcome or manage. And we will help him with that.

But finally we know the answer to the mystery of the past year.

I hope you all will not mind me still coming to this forum? Many ASD children also have regulatory disorders and I really learn so much from other parents. I also would like to share as much of what I have learned also to help your kids who have the same issues as my son...

What is a regulatory disorder? Is it actually a diagnosis in the DSM manual? How does the treatment differ from treating ASD? 

Any social issues to think your son had ASD?

Did he have the criteria for ASD? If not, what did he not have?

I ask because my son "appears" almost NT. But he still scores moderate PDD on childbrain test.

You know we use to live there, all of their EI therapists were trained at George Town University and they wanted me to take the boys there, probably to see him (Don't remember the name of the dr they recommended now) and I refused because I had never heard of him, my insurance wasn't going to cover it and it was an 8 month wait list. Now I kind of wish I had found the money and done it. oh well. Glad you got in though. It does sound a lot like the boys, although they do have a language deficit. I'm not sure how much of a deficit. I think I'll start by reading the books.OOOH great
I will be thrilled if you stick around on this forum too
Greenspan does talk a little bit about regulatory disorders in his book The Child with Special Needs
[QUOTE=fred]sunflowers, sorry you've had such a tough past year! I'd be rather annoyed if I'd had clinicians diagnosing my children with an ASD when they had neither social or language defecits.  Talk about a lot of needless worry.  Wow.  In any case, it's great that you have your answer and I hope you are feeling elated with the news![/QUOTE]
Yes Sunflowers what a needlessly stressful year for you !!!
-Atleast now you know !
Thanks Fred...

Yes, it's been a hard year. No clinician ever said he was ASD except for one OT (who I don't think is authorized to dx anyway). But I always felt we were seeing the wrong people because they hadn't seen alot of Aspergers or PDD children to compare my son to.

I'm actually guarded about this dx because we still have a long way to go before my son will show improvements from his regulatory issues. Dr. Greenspan expects parents to do alot for their kids and I don't know how I'll find the energy or time to do all that he expects of me. Oh. Well, I don't think we're going there any time soon! Thanks fred. I was just being lazy and not googling him.

If we go by symptoms alone, a child may show signs which might suggest SPD, OR ADHD, OR LD or ASD. Doesn't mean that he have all of them. He might just be one of those, like SPD in your case. I think that's fantastic news. What made you think that he might have ASD?

Mary

 

 

Sorry I did not reply sooner.

Greenspan is located in Bethesda, MD.

It was almost 6 mos from the time I called before we actually got to see him. So we were on the wait list for that long...

My son did not have any communications issues. He had no problems with pragmatics apparently. He had appropriate expressive and receptive speech. He also had approprite reciprocal speech. These kind of issues are one of the core deficits of ASD however.

His social skills are apparently age-appropriate also.

BUT -his issues are mainly that he needed tons of sensory input. He needs to always touch everything. He loves deep compressions. He is always fidgety, appears hyper at times but extremely calm at other times though. He craved the sensory input of fans - the wind from it as well as watching it spin. He craved the scent of soaps and candles too. So it was these that he was fixated with. On some occasions when he got super overstimulated he needed to avoid eye contact. That doesn't happen much anymore but it used to happen a year ago.

We paid out of pocket for this.

sunflowers, sorry you've had such a tough past year! I'd be rather annoyed if I'd had clinicians diagnosing my children with an ASD when they had neither social or language defecits.  Talk about a lot of needless worry.  Wow.  In any case, it's great that you have your answer and I hope you are feeling elated with the news!regulatory disorders are sensory processing issues, auditory processing issues, visual spatial processing issues....

Even with regulatory disorder a child's behavior may appear disjointed, unplanned, bizarre at times. It was explained to me that when the child's sensory needs are met on a daily basis, then this behavior goes away and the child will be more focused and less hyper. My son's play did appear disjointed at times, mostly when he was in a new setting such as in preschool, a new friends home, etc...He seemed unable to calm down, moving almost constantly, unable to play with one toy for more than 1 minute or so. Then at home he would appear more normal.

Apparenty my son didn't have theory of mind issues either.

Does he have assessment tools to determine a baseline for the child's developmental level and to track progress?  I have to say, his theory of delayed development and focusing on the core developmental defecits rather than the symptoms (the language delays, perseveration, stims, etc) makes sense and is also quite different from what we're doing now (language therapy, OT, etc.).  All the language therapy in the world isn't going to help the girls get past their real problems, which, ironically, were not apparent until their language developed enough to expose them.

 

I am being extremely nosy here - but can I ask how much you paid to see him? [QUOTE=fred]

I have to say, his theory of delayed development and focusing on the core developmental defecits rather than the symptoms (the language delays, perseveration, stims, etc) makes sense....

  All the language therapy in the world isn't going to help the girls get past their real problems, which, ironically, were not apparent until their language developed enough to expose them.

[/QUOTE]

I am with you on this one. I was very impressed with his theory of six developmental milestones. (I am reading his floortime book nowadays). He does ask for HUGE amounts of play time from parents though, I do not know if I can do so much with my son.

Mary

 

00 is the standard fee I think....we really had to stretch our budget to pay it.

The Challenging Child is a book written by Greenspan and it's mostly about regulatory disorders.

The Special Needs Child is a book about almost every disorder and discusses those six milestones he relies on in evaluating kids.

These books were fantastic so I recommend reading them.

Thanks sunflowers! The more I read these posts, I think regulatory disorder is not really the issue with ds. Even though he has Restless Leg Syndrome, he sleeps 11 hours a night and is very good about letting me know when he is hungry!

I have the Special Needs Child but haven't gotten around to reading it yet.

Sunflowers - yes, please stay! I'd love to get your input and have you share more about Dr. Greenspan!

Snoop, he's in MD (http://www.stanleygreenspan.com/ ). 

Happened upon a description of regulatory disorder on a website that zayzer just posted.

"A regulatory disorder is an impairment of the normal ability to process sensation(s), to receive information from the senses and respond (or not respond) to this information while staying calm and attentive.  Infants with regulatory disorders may under-react or over-react to stimuli such as noises and bright lights.  They may show "tactile defensiveness;" that is, they may stiffen and arch their bodies to avoid the physical handling associated with being dressed or held.  They may under-react or over-react to pain. Or, they may have difficulty processing several stimuli simultaneously."

"Consider, for example, a mother who strokes or rocks her baby while singing or talking to her.  This normally developing infant is simultaneously exposed to a visual stimulus (the human face), an auditory stimulus (song or speech), a tactile stimulus (touching), and kinesthetic stimuli (rocking).  A baby who has difficulty processing several sensations at the same time may be overwhelmed, and may "turn off" her processing of the human face."

"This may interfere with the child's developing shared attention and reciprocal gesturing with her mother, compromising the development of communication and social relationships. Thus a "multi system developmental disorder." "

Source:  http://www.thechildrensclinic.ie/autism.html#msdd

Boy, what an honor to meet Dr. Greenspan.  Thanks for sharing your story, and by all means stick around!How are regulatory issues treated?My son seems to have both.  could it be possible for my ds to have BOTH a regulatory disorder and Autism? Hope that is not a dumb question...

Do regulatory issues impace socialization?
If so, How?

I have a friend whose son was just recently dx'd with a regulatory disorder, however he is very social, he is now 4, he was in EI at 3 with OT and he seems to be getting better.  It is interesting, because when I first met them I thought about ASD, but he is very social.  I had never really heard of it before then.   

Spd or Sid isn't just with asd. Sadly asd still is thought like it was in the 70's to some professionals. Not all forms of asd cause antisocial disorders. I have seen some Asperger's kids who are very social. We were told a regulatory disorder with Daniel at 2 also. Daniel seemed different showing at 4 months old.

My son's regulatory disorder is being treated with lots of OT.

It can affect social functioning so playdates were also recommended.

I think the social functioning of even very social Aspergers children is different though. Some may have a great desire to be sociable and try to socialize but have a hard time with the normal appropriate reciprocal interaction. They may say inappropriate things, not pick up on subtle social cues, facial expressions....

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