Three separate diagnoses. WTF?

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I've been visiting WP for awhile, although I don't post very regularly. My 4-year-old son has displayed a fair amount of autistic traits since he was just about a year old. He has improved a lot since age 3 when he started speaking in sentences, but still has issues with transitions, change, and social interactions. However, he has never had poor eye-contact (except when he's having an absent spell) and smiles frequently (although usually from genuine happiness rather than to be social).

Anyway, he finished his autism team assessment on Thursday and this is what the psychologists told me: He has many autistic traits, but not enough for a diagnosis of autism spectrum disorder. Instead, they gave me three separate diagnoses of anxiety disorder (not specified), language disorder, and Oppositional Defiant Disorder, which seems like a weird label for a preschooler who has meltdowns because he is wearing a jacket that terrifies him.

We are in British Columbia, Canada, and this was done by our regional assessment network. A friend in the states, who is a psychologist and does autism assessments, said his diagnosis seemed "curious, to put it generously."

Does anyone know how to go about getting a second opinion in the Canadian healthcare system? This process has already taken a year and a half. I first brought James' differences to his doctor's attention three years ago and my concerns were ignored until his 3-year checkup when he had a meltdown in the office.

Or it actually possible that a preschooler would have three separate disorders rather than a constellation of symptoms that are neatly encompassed in a diagnosis of PDD-NOS?

Hi Hethera,

I am in British Columbia too, and our family is currently on the waitlist for Sunnyhill for screening. Your message does not give me a whole lot of hope We pursued private testing and our son (age 7 at the time) was found not to be on the spectrum, but the huge difference for us is that we didn't receive any other diagnosis. I guess my message is, that while you did not get the diagnosis you were expecting, you did get something concrete that you will be able to take to the school in the future and hopefully get some support. Believe me, you are starting at the right time, being that he is four. Have you been referred to your local Child Development Centre for services? If you have not, give them a call and let them know. Get started now on working on these things. If you have the services in place now (esp language!) it will be hopefully be easier to transition them (the services) into the school system. Once your child is six, if he hasn't been involved with the CDC, you are basically hooped at getting services unless you pay (and pay lots!). At least that is my experience.

I am also surprised at the ODD dx??? Personally I am not a big fan of the whole ODD dx... Did they have an occupational therapist do an assessment for sensory issues? Our son has huge sensory issues. I tried to get OT in through the school, but because we have no designation, we ended up having to go private. We did arrange for a private OT clinical consultation and our son is now going to weekly OT sessions to address some of his sensory issues. We can't address all of his issues at this time, there are far too many! You could maybe check with the Child Development Centre about an OT consultation around sensory issues.

What kind of recommendations did they give you for follow up? I haven't looked too closely at the screening guidelines, is there perhaps a dispute resolution process? There are, of course, private testing options, however I don't know that you would want to go that route right now given that the testing just happened. But it might be something to look at in the future? We also paid for a private psychological educational assessment which identified many areas and issues our son has with learning, but those generally are not done until the child is in school.

We currently have a referral in to see a doctor at Children's Hospital as we are reaching crisis mode with our son's rigidity around leaving the house. I had to spend an extra hour at school drop off this morning, because he refused to enter the school. We gradually worked our way toward his classroom, and I left him there, very upset and anxious. It is so incredibly difficult. I can soooo commiserate with you about not getting the diagnosis you were expecting. I'm right there with you.

Feel free to PM me if you want to talk more specifically around British Columbia issues...

cutiecrystalmom

not surprised and we had a similar thing in USA (one ambiguous DX from well recognozed autism doctor, and "nothing" from neurologist).
i don't believe them a bit after that. we are using help for specific issues though.

I was in a similar situation. My son was assessed in kindergarten but was told he had ADHD and was considered a slow learner. It didn't explain a lot of the other issues he was having that did not tie into the ADHD realm. Five years later, he was reassessed. You just have to push for it. I don't think there's a lot you can do right now but once he's enrolled in school, they may be able to help you access other resources and push for further testing. Unfortunately, as parents, we are not given enough credit. I was basically told that I worried too much .. despite the fact my son was born with a brain injury. I worried too much .. despite the fact the neurologist said we wouldn't know the outcome of his injuries until he was school aged. "I worried too much". Lets wait a year.. lets wait ANOTHER year. In their eyes, I was just a young mother who "didn't know anything". They were wrong. I knew long before they did, and it took them 5 years to believe me.

Don't be discouraged though. Be the advocate. Utilize the school system and press on them every chance you can. Unfortunately, the school's psychologist will not do a psych-ed for children in kindergarten. If you press on it, they may help you out by the time he's in grade 2 or 3. Push push push! Be loud. Be NICE and they will help you.

Hethera-

I don't have any specific advice on how to go about getting a second opinion, but I can say that your son sounds very much like my son who was diagnosed (in the US) at 2.5 yrs of age with PDD-NOS. He too has always had good eye contact, and has interacted very well with us and adults that are close to him. He is almost 6 now, and has been in speech therapy since he was almost 2. He is speaking in complete sentences and can have a small conversation, although he prefers to talk with adults. He has very little interest in his peers. He is learning to read now and can spell some words, He is asking questions and seems to have improved greatly in the last couple of years. However, he is still on the spectrum. There are many times that I have wondered if he has ODD, but some of his behavior has reasons behind why he won't do something or has trouble following directions. My son also has many ADHD like symptoms as well. But this is all common for kids on the spectrum.

I would just keep assuming that he is on the spectrum and keep working on the issues as necessary, and continue to fight for the services that he needs.

Good luck!

I think AS is extremely difficult to diagnosis in younger children. If he is AS, it will be more apparent as he gets older. I would work on his immediate needs and pursue the label again in a few years.

My son was diagnosed at 7 and I honestly do not believe it could have been done sooner.

Remember that diagnoses are just labels. Your son is still the same person whether he has a diagnosis of PDD-NOS or the set of diagnoses you got.

The only difference it may make is if the diagnoses affect what kind of help your child can get.

ODD=Oppositional Defiant Disorder=we as psychologist/psychiatrist think your kid is a brat

I HATE that "diagnosis"....Its not even a diagnosis....its just a clinical sounding name that means you have a kid who acts up!

They always tried to strap that diagnosis among others onto my oldest son who actually had early onset Bi Polar disorder that wasnt properly diagnosed until he was 12. He had all the signs and symptoms at age 2 but no one wanted to believe that a 2 year old could be Bi Polar.

Im sorry you can not get the help that you need. There are many places that are simply behind the times and do not recognize that Autism is a spectrum disorder. You should ask them why a child that young would have an anxiety condition if there were not some underlying condition or reason that caused it?
Here in France they have no early intervention services so there tend to be more severe cases as that window of time is missed and kids are behind where they should be. Im thankful we were in the US in the area we were in when my kids were diagnosed. Even though my daughter was diagnosed severe because of the early intervention she is now labeled HFA. I can see the impact of her therapy since we moved here. We have been fighting to get therapy started and they just started it a few weeks ago. My daughter has regressed and it makes me angry for her and it makes me angry for the other children here. My husband met a woman at work who has a 23 year old son with Autism. He was beginning to talk at age four but she was pushed to put him in a group home and when he came out he had lost all his language and he is now more abusive and severe than he was as a child. She also is working at changing the system here to help kids get the services they need.
Sorry for the rant but I think the "experts" need to get with the program!

Also...what the heck is a "language disorder"??? these people, shesh!

A good mental health professional, if a parent says what they think their child has, might say something like, 'Okay, maybe, let's see. Let's do the complete evaluation and see.' And if the professional concurs, might say, 'Yes, you were right. You picked that up very good.' That is, if the professional agrees, he or she compliments the parent and supports the parenting skills.

A not-so-good mental health professional, views it as one-upsmanship and is less likely to find a diagnosis that agrees with the parents. (The good professional is neither more likely nor less likely, but does takes the parent's oobservation as useful information.) And, it almost goes without saying, once the *diagnosis* is made, it might as well be etched in stone. The 'professional' takes great offense if the parent 'argues' or 'debates' even if the parent is bringing up very valid points.

Now, 'Oppositional Defiant Disorder' is a bad diagnosis. It could be taken to mean, it's even more important than average that this child perceives he or she is being treated fairly. So a little bit extra effort to explain why we have the rule. In practice, it's usually quite the opposite, just an excuse for a squelch down. So, you have this downward spiral of greater authoritarianism, more oppositional behavior, greater authoritarianism still, etc.

It might take a while, but please remember: You do have a right to a second opinion.

Note: I AM NOT A PARENT. but I have lived the life and I'm a pretty good guy.

You can always try to sit down with the clinicians and ask them to go over the results with you and show you the logic behind their diagnosis.

In my experience, kids with ODD just hate being told what to do. They don't see what gives anyone the right to have authority over them and they will do what they are told not to do just because they've been told not to do it.

When people with AS are defiant they are usually not intending to be. They are usually just being pushed into a situation that causes them a level of stress they can't handle, or into a situation they don't know how to navigate. Other than that, people with AS usually prefer to follow rules by the book.

I think a lot of times a lot of kids who have been diagnosed with an anxiety disorder or depressive disorder don't actually have one. Some might, but I think most don't. Kids actually do have a lot of things to worry about and can be afraid of things that mystify adults. For example, the drain in the bath tub or getting their hair cut.

I think some kids are naturally going to be a little more anxious and insecure than others, but it might not necessarily be an anxiety disorder. I think kids tend to get pigeon holed into diagnoses of anxiety disorders and depression because they don't really know what the clinician wants of them, they might be aware of their feelings but have not formed a solid enough external reference point to measure their feelings against any social norms, and so even if they know what the clinician wants of them, they can't necessarily provide them with relevant information. So eventually the clinician just says they are depressed or has an anxiety disorder because there's obviously something wrong with the child, they don't know what, and it's easy...it's a bit of a miscellaneous category.

It reminds me of a time an anthropologist told me "When we can't figure out what an artifact is, we classify it as a spiritual object"

From my experience with ODD, I knew a kid with it and he was mean and a bully. He abused his mother and broke stuff to get his way. He bullied other kids in his school too and liked controlling them. He also did the same to the teachers but he always get into trouble for it. He did abuse for control and he yelled and screamed when he get told to do things or if he wanted something, he say 'Mom, go get me some dinner?" and not even say it nicely. So it is indeed a real thing. No child acts that way. Not even aspie kids act that way. No child tries and gets their way with manipulation and violence. Even aspie kids don't do this.

That sounds like me as a kid but I did listen to grown ups because I was taught they had authority over me. But I still did things I was told not to do because I wanted to see what would happen and they wouldn't even tell me why I couldn't do it. I refused to take something that had no explanation to it. I had to know why. Then at age 12 I realized it was laziness on their part. They are too lazy to say why.

Maybe petit mal seizures? Not necessarily related to autism at all, but certainly an autistic person can have seizures.

(This is where it's so valuable to have a doctor you can halfway talk with. And I'm sorry those previous clowns ignored you, I guess viewing you as 'just' a worried parent or something like. Well, you are not 'just' a parent. You are a Parent, and you observe things, which a good doctor would well-heed to listen to.)

The multuple choice dignosis thing is really kinda weird. I have found doctors have this ego thing going on where if a parrent knows what is going on then the doctor has to be smarter than the parrent even though the parent is right, so the doctor dignoses the kid with something else just to be superior.

But the ODD dignosis is a really bad idea cause there are no real services for that, same thing with anxiety disorder.
If I were you, I would seek a second opinion.

A language disorder is some type of impairment in the ability to communicate. It could be enunciation (making words sound right), expressive (can't get the words right to express a thought), receptive (hears the words, but the brain misses something in the translation), social skills (not being able to pick up on nonverbal cues from others, etc) and other areas as well. My grandson who is six has language development of a three year old, although he is very bright in math, and is highly spirited in his mannerisms.

Thanks for the responses, everyone! Aardvark, his referring pediatrician did an EEG to rule out a seizure disorder before referring him to the assessment network. Which was a boatload of fun, because preschoolers love being covered in electrodes. After an hour and a half of screaming and two adults struggling to restrain a 36-pound preschooler, it was determined he didn't have epilepsy. Psychohist, I know that it's just a label, but it will allow him to get occupational therapy, longer speech therapy than he'd get for just expressive language disorder, and an IEP in school. I also feel like autism would be a better label for him than ODD, because he's not some aggressive, defiant child who runs around causing problems on purpose. Usually he is very eager to please and good-natured, and he has rarely been a "discipline problem" at home or school. He just has certain triggers (noise, touch, jackets, his bed being moved away from the wall an extra millimeter) that set off meltdowns.

Nope, no OT check for sensory issues. I told them and told them that his meltdowns center around sensory issues and changes in routine, but he is going through a contrary phase (which technically needs to last 6 months or longer for an ODD diagnosis, but apparently they're not as stringent on their diagnostic threshold for ODD as they are for autism) and kind of tried to control the entire assessment.

For follow-up, they recommended some play therapy at Child & Youth Mental Health to help with transitions. However, if they're working with him in a framework of ODD vs. PDD-NOS, would that even be helpful? Would the techniques be the same? And this gives me no help with potty training or those public-bathroom fans that you can't turn off because they're integrated with the lighting!

I can totally sympathise with you on the school situation. James was the same way last year. It took until almost Christmas to get him to come in the door of his sister's classroom. I'm happy to say he is MUCH better now and very happy to come to preschool. The other week, his class met in another classroom and he only panicked a little.



Unfortunately (or fortunately) he is in private school. They are very accommodating and my son has made huge strides, which is perhaps why the shrink didn't feel he met the diagnostic threshold. There is not much of a psychologist there, although they do do IEPs. It is aggravating because I feel like he'd get more help in some ways at a public school, but the classroom experience wouldn't be as positive. His teacher and the Montessori approach are fantastic and there is a lot of one-on-one.



I did. They beat around the bush and kind of implied it was from his speech delay. I also asked them "why three disorders?" and they mumbled and hemmed and hawed. I asked why he'd have ODD starting at 18 months and they said it was frustration from his speech disorder and anxiety disorder. I am so not impressed. We are absolutely looking up appeals process, umbudsman, etc. to see what we can do to get a proper diagnosis that will lead to the correct therapies. As it stands he can only get ST for the rest of the school year because I'm holding him back from starting kindergarten in the fall. He is a November baby but was due in January. I could go on and on about how this entire system frustrates me!!

I did some checking, you can self refer to Child Development Centres and Occupational Therapy should be a service you can access as long as he is under the age of 6. Call your local center up and see what your options are. Ask to speak to the OT at the Centre directly. Even though my son is 8.5 the OT at my local centre still took my call and gave me a few hints to address some of the issues we were experiencing. Try and access this service while you still can, once he is 6 it is private ($$) private ($$) private ($$). I can't emphasize this enough!

I think it is a good idea to red shirt him until next year...my son was a late October baby, I put him in Kindergarten not knowing I could keep him out for another year. I think things would have been better had he had one more year at home. You have a supportive environment right now - trust me, public is not necessarily the answer either. A supportive school who shows a willingness to work with you and LISTEN to you is what you are looking for. Every meeting I have with our school counselor I am told "I just don't understand your son, I can't figure him out". So...that kind of tells you the usefulness of his role

We did the play therapy with Child and Youth Mental Health, it was not all that helpful for my son, he would shut down as soon as they started challenging him on anything he found uncomfortable. We tried their anxiety groups as well, and while they were helpful for me (they offered a simultaneous parent group), it was not all that helpful for him. Cognitive behavioral therapy (CBT) is pretty tough for kids who are not developmentally at an age where they can understand and make the connections. Really CBT is designed for much older children who have some idea of how to describe and somewhat understand what they are feeling (imho). I spend a LOT of time identifying the emotion I believe my son is experiencing when he is overwhelmed and screeching his head off. I try to give him the words to identify ie. "I am feeling frustrated. My sister won't play with me".

I honestly, HONESTLY don't know how you get a dx of ODD starting at 18 months. I don't. I believe there are legitimate cases of ODD (as a previous poster illustrated) but I think it is an all to handy dx to throw out when a child is refusing something instead of doing the work to find out WHY the refusal is occurring.

I will do some more looking and see if I can find anything about appeals process. Have you contacted Autism Community Training (www.actcommunity.net) in Burnaby? They have information officers who may be able to assist you or at least provide you with some direction.

Good luck!

cutiecrystalmom