Anyone want to share changes in diagnosis?

[tgrimes]

Well, this thread is the place. I'll start with something that's been on my mind a lot lately. My 9 year old was diagnosed with autistic spectrum disorder at about age 3 1/2 by a pediatric neurologist.
That diagnosis was fine for a few years, no one questioned it, but in recent years I heard a lot of "he's not autistic, he's defiant" and things like that from the certain teachers (not all) they even changed diagnosis on his school 'label' to aspergers because he is high functioning (on occasion)
So lately, I really have wanted to get a review of his diagnosis, whether it confirms or disputes the original one, or whether there are co-existing things like ODD or OCD.
We are in the middle of a 3 session diagnostic thing with a behavioral pediatrics group. A couple of weeks ago he was supposed to do some testing with their psychologist and he completely refused to cooperate and totally shut down... so they got to see basically what happens at school at least. So next week I go for the last of the visit and will be able to ask questions about best strategies and see what he has come up with for a diagnosis.

Am I in for a lot of confusion if the diagnosis changes?

[rbear4]

We have been through this a couple times in varying degrees. I just think when you get to the more able end of the spectrum there is too many diagnosis and too much overlap. It is so confusing.

With my dd she was dx'ed PDD-NOS 9 years ago when that was all the rage. Now she would be diagnosed as autistic. Then at 7 her language skills had improved so she was diangosed Aspergers, she also has epilepsy. I don't worry about hers too much because AS fits her pretty well now though with her early language delays some say she should be autistic. The regional center (CA) and school district consider her autistic which is enough for services needed.

My son is a different matter. He was verbal early on and we were in denial. I downplayed anything autistic so after a bunch of questions and a bunch of various diagnosis he was finally dx'ed AS at 7.

However, recently the AS diagnosis is called to question as autism fits more based on his language abilities and symptoms now. However, no one really wants to go there officially. They will say "autism spectrum" or seems more autistic or there is more going on than AS but no one has definitely said "autistic". However, again for educational purposes he is listed as autistic and he qualifies for regional center, though they were quite vague.

No one at school questions his autism though. I think we are on the other side where his official diagnosis on paper is still Aspergers but most believe he is autistic. We are kind of going through rediagnosis now but through a educational diagnostic center so I don't know if they just go with educational autism or if they will medically diagnose as well.

Don't know what good it all does. To me they are both kiddos with ASD.

Renee

[Isabelle]

Services you need, but don't let them cover your child with diagnoses, some respect for the child, he has some rights to reject the psychologist or the teacher. It's very important to build rapport and to earn his trust.

I learned that the more diagnoses a child gets the more money the school receives but not exactly for your child needs.

[Lara]

We had some difficult experiences for my son with diagnoses. He was diagnosed with a condition called Sydenham's Chorea at age 5. Health continued to deteriorate and he got differential diagnoses of Tourette Syndrome at age 10. (He also had OC issues and Attention difficulties, plus he had by then developed quite severe anxiety and sensory issues he had all along). His doctors were putting his OC problems and attention problems and everything else under the TS umbrella, unfortunately. It wasn't always his tics that were causing him the most problems. There were times when it was his OCD and other times it was a combination of everything. Between ages 5 and 10 he had a very difficult time with all the above. When I say difficult I mean it was quite disabling for him on a daily basis.

He did have a few accommodations that we were able to put in place for him at school regarding his more severe ticcing times and dysgraphia, but at that time here, (he's 19 now) he wasn't afforded any legal accommodations at all. It just wasn't done in our schooling system. No IEP's, nothing.

To cut a very long story short, I had figured he was on autism spectrum for some time because a lot of what was going on just didn't make sense to be part of Tourette Syndrome and his TS neurologist and specialist not seeming to know too much about any of it.

Between the ages of 10 and 13 lots of big changes happened. Ended up seeing Tony Attwood here, and he just basically said "classic asperger's", but of course he still had his tics, oc stuff, attention stuff, sensory stuff, lots of oppositional stuff, etc.. :) So, was it confusing to get a new diagnosis at age 14? Definitely not. It actually clarified everything and we never saw another neurologist or psychiatrist again lol. It was the greatest thing that ever happened.

The only problem was that it was too late to get a lot of interventions that could possibly have helped him all the way along, like OT services, more direction in school etc. etc.. Lots of things that he really did need. I don't think it's a bad thing to get diagnoses sorted out at all and really and truly if people don't get correctly diagnosed (and the earlier the better) then they're going to miss out on help and direction that can make their lives a lot less stressful then and in the future.

I'm not fond of long lists of diagnoses either, but if a child is suffering or struggling in some way or other, it truly does help to know how to go about dealing with those things and implement strategies applicable to the issues. If a child isn't struggling with something then it doesn't make sense to call it something e.g. OCD or ODD, if it's not that at all.

By the way, I can't imagine any teacher being in a position to change diagnoses of a child here where I live :eek: Since when did teachers had the ability or the knowledge to do that? That doesn't sound legal to me, but of course I don't live in your country so can't really comment.

If somethings not feeling right, go for differential testing. Sometimes the docs. get it awfully wrong the first time.

[Keggy]

We had a pdd/nos dx since age 3 as well, changed to aspergers a year or so ago. The reason being is due to a CAP disorder, which is still there.

I guess that explains why we are all so confused about why some of our kids appear to be social (but have problems doing so) vs kids who are more withdrawn and do not appear to want to be social.

Its all semantics.. has little meaning anyway. Sometimes I think we get too caught up in the names and labels, and it makes no difference anyway.

[tgrimes]

We have been through this a couple times in varying degrees. I just think when you get to the more able end of the spectrum there is too many diagnosis and too much overlap. It is so confusing....
.........Don't know what good it all does. To me they are both kiddos with ASD.
Renee

Renee - Hi... glad to see you again! How are the kids... are you working for the school again? I thought I remember something about that last time I was 'lurking around' here. I think that is part of the problem here too, my son appears very able in some instances, but is regularly 'unable' to do the same things for whatever reason, and that causes a lot of frustration for people working with him.
Even a more accurate diagnosis might not be of much use if behavioral treatment is to stay the same.
thea

[tgrimes]

... he has some rights to reject the psychologist or the teacher. It's very important to build rapport and to earn his trust.



Isabelle - so true about the building rapport thing, with my son too. There are some people who have such an easy time with him, they can't understand why he is not cooperating with others.

[tgrimes]

[QUOTE=Lara;3806] ... There were times when it was his OCD and other times it was a combination of everything. Between ages 5 and 10 he had a very difficult time with all the above. When I say difficult I mean it was quite disabling for him on a daily basis. ...

...By the way, I can't imagine any teacher being in a position to change diagnoses of a child here where I live :eek: ...
...
[QUOTE]

Lara - Yeah, I don't think that was correct to change the IEP diagnosis without a medical diagnosis, but I live in a county that has some real problems with autistics, many end up using a state sponsored scholarship program that pays for private school.
Anyway, when you say OCD was quite disabling, what do you mean? He could not bring himself to do something over a little technicality or something like that?

[tgrimes]

...Its all semantics.. has little meaning anyway. Sometimes I think we get too caught up in the names and labels, and it makes no difference anyway.

Yeah, I feel like that sometimes, but have lately started to worry that sometimes we are rewarding/punishing for compliance/defiance but the problem is really more to do with obsessing, and I don't know enough about either disorder to know whether these should that be treated the same way. This should really be a whole new thread, the reward and punishment thing.

[Lara]

Anyway, when you say OCD was quite disabling, what do you mean? He could not bring himself to do something over a little technicality or something like that?

Oh no. He's always been rigid like that and found change difficult. Functions well with routine, but the moment that routine changes is the moment we're more likely to see him blow off steam. I see that as just part of his nature.

When his OCD was disabling, it was because his obsessions and subsequent compulsive behaviours were all consuming emotionally and physically. Meaning he would need to spend so much time and energy following through on his obsessive thoughts that he couldn't get past it and move on to anything else. I call it being "driven". I see that as totally different from his obsessive interests and he's always had many. There's no anxiety involved in those, unlike with his OCD which basically is anxiety driven. The need to follow through with the action after the thought.

Edited to add. I have a Baron-Cohen paper here somewhere. I'll go find it. I found it helpful. It talks about the differences in obsessions.

Here's one of the papers. There are a couple. I don't know if they'll be helpful to you or not, but they were to me. Note it's a PDF
Obsessions in Children with Autism or Asperger's Syndrome (http://autismresearchcentre.com/docs/papers/1999_BCetal_Obsessions.pdf#search=%22Do%20autistic %20children%20have%20obsessions%20and%20compulsion s%3F%22)
a content analysis in terms of core domains of cognition
This paper appeared in British Journal of Psychiatry, 175, 484-490, (1999)
Simon Baron-Cohen and Sally Wheelwright

P.S. If you're interested in reading more on this subject, try searching for "Folk Physics"

[Lara]

Here's another bit from National autistic society

Obsessive compulsive disorder

Obsessive compulsive disorder (OCD) is described as a condition characterised by recurring, obsessive thoughts (obsessions) or compulsive actions (compulsions) (Thomsen, 1999). Thomsen goes on to say that obsessive thoughts are ideas, pictures of thoughts or impulses, which repeatedly enter the mind, whereas compulsive actions and rituals are behaviours which are repeated over and over again.

Baron-Cohen (1989) argues that the stereotypic obsessive action seen in children with autism differs from the child with OCD. As Thomsen (1999) explains, the child with autism does not have the ability to put things into perspective. Although terminology implies that certain behaviours in autism are similar to those seen in OCD, these behaviours fail to meet the definition of either obsessions or compulsions. They are not invasive, undesired or annoying, a prerequisite for a diagnosis of OCD. The reason for this is that people with (severe) autism are unable to contemplate or talk about their own mental states. However, OCD does appear often to coincide with Asperger syndrome, although there is very little literature examining the relationship between the two (Thomsen, 1999).

Szatmari et al (1989) studied a group of 24 children. He discovered that 8% of the children with Asperger syndrome and 10% of the children with high-functioning autism were diagnosed with OCD. This compared to 5 per cent of the control group of children without autism but with social problems. Thomsen el at (1994) found that in the children he studied, the OCD continued into adulthood.

People with Asperger syndrome can sometimes respond to conventional behavioural treatment to help reduce the symptoms of OCD. However, as with anyone, this will only be effective if the person wants to stop their obsessions. An alternative is use medication to reduce the anxiety around the obsessions, thus enabling the person to tolerate the frustration of not carrying out their obsession (Carpenter, 2001).

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1049&a=3346
National autistic society

[rbear4]

ACK! Anyone else having trouble with logging in or posting?

Thea, It is good to see you too. The kids are doing so-so. Mike has had a great couple of years with his current teacher. We are currently undergoing loads of evals and diagnostic center stuff to try to figure out what to do with him for middle school next year. There really are no appropriate placements for him and the thought of him going on to middle school if he doesn't have his current support system scares the bejeepers out of me. He will likely end up in a small private special needs school that is not too far away.

My dd, wellllllll, that is a can of worms. She is in middle school in the HFA/AS program. One would think that a program set specifically for these guys would be good. Not so and I have been fighting them for the last year. She has dropped dramatically in many of her academic skills, she now has epilepsy, is depressed - nearly clinically, her social skills are scary because basically the only real reinforcement she gets from school is from boys and now she has turned boy crazy and she is a nieve target. I have gotten to the point that I want to move her to that same private special needs school.

It has gotten to the point of due process over an independent assessment of all the stupid things. We just recieved notice today from the district of the dates for mediation and due process. They are trying to scare us and doing a pretty darn good job, though I won't let them know that. I have an ed consultant and regional center will cover the cost of a lawyer through this public service (protection and advocacy) but I am having a hard time getting them to get back in contact with me. Kind of like a public defenders office I guess.

At home she is a peach. She tries so darn hard every day. She is riding in the demonstration at the big yearly fundraiser for the theraputic horsebackriding program she goes to. She volunteers there a full day every Saturday as well. Her current goal is to be a NAHRA instructor for a place like REINS because she wants to teach children with special needs and work with animals (her obsession)

Wow, I just unloaded didn't I. Whew.

Renee

Thanks though, nice to see you!

Renee

[tgrimes]

renee - wow, sounds like you have a lot going on. Now mikey going to middle school next year? I remember being so worried with my older son going into middle and figured he would never be able to handle the frustration of changing classes but he shocked us and did real good with that and liked having more classes a lot because he knew he only had to get through a certain period of time before the period was over.
Sorry to hear about epilepsy now too, and the depression with your daughter can be really scary. I know how you feel. Just keep focused on how well she is at times, like at home, or that REINS program, sounds like there are plenty of positives to help out.