So if it's not autism...?

[Spoonful of Sugar]

Okay, I haven't been here for a long time, just because I've had no answers about what's going on with DD, so I had nothing new to post. Anyway, she used to have a gross motor delay and I was trying to get answers as to why. Now she's almost caught up in that area, and our new challenge is behaviour. I've been told by her neurologist and her psychologist that it's not autism, but I'm just wondering... what is it then...? Here are the behaviours, etc, that I'm talking about:

- terrified of all kids and many adults, shy to the point that she won't speak even to children she has known her whole life, and clings in terror whenever around other kids

- huge tantrums that happen every couple of weeks or so, involving screaming and growling like an animal, clawing at face

- less major tantrums several times a day over anything and everything

- goes about five minutes at a time without getting upset about something, however minor it may seam to others

- used to have a lot of sensory issues, but not so many now... freaks out if you try putting anything in her hair, like clips or ponytails, so maybe a sensory thing?

- strange fears, like flies and the sound of music in cars on the street, that come out more often when she's stressed

- although she's almost caught up in motor skills, she's still clumsy and nervous about doing many motor tasks

- rubs herself up against things, possibly to relax, and often keeps at it for an hour or more at a time

- cannot smile on command, like for photos... she will smile if something is funny or if she's happy, but just makes this weird face if she tries to smile when asked

- sometimes gets obsessed over little routines, like telling a story just exactly the same way each time (I realize a lot of kids are like this, just adding it to the list)

- stares or makes strange or angry faces at people when in social situations

I'm sure there's more, but that's what I can think of right off the bat. The reasons I've been told she doesn't have autism is she makes good eye contact, has excellent language skills, and is very social in appropriate ways with people with whom she is not shy. Is there something else that looks like this? I don't understand why we're not getting a diagnosis, or being referred to someone who can give us one.

I tend to think autism is overdiagnosed, and at first I didn't feel like we needed any diagnosis -- she is who she is, why label her? But now I am dying for someone to say she's not just a bad kid. Her behaviour hasn't responded to rewards, punishments, natural consequences, or even just understanding and love. I'm so tired of getting mad at my daughter for something she doesn't seam to have much control over. I'm tired of everyone else thinking I haven't tried disciplining her. Disciplining her is, unfortunately, ALL I've been doing since she was old enough to misbehave. I'm so burnt out. Anyway, thanks for listening, and any advice you can give.

Oh, I should add that I got a pretty good video of her tantruming today and emailed it to her psychologist. When I watched the video and saw the glazed look in her eye as she smacked herself in the face and shook her head around, I just thought, there's no way this kid doesn't have autism. It seamed so obvious. I'm interested to see what the psychologist thinks.

 

[bookwormde]

The reasons that you have been told it cannot be ASD are completely invalid and if it is clinicians who are telling you this they are grossly incompetent.

Even if she does not meet the formal criteria for a diagnosis fir HFA or Aspergers it is clear that she has major impact from characteristics that are part of the Autism genetic set that the clinicians should be evaluating, viewing and providing clinical supports in that light.

It sound like her primary presentation at this time is the sensory differentials (sensory integration) so they should have diagnosed that as a "no brainer".

She clearly has major social variations when outside her familiar circle.

You have not mentioned any Executive Function differences (ADD type characteristics, strong image based input preference, ability to hyper focus, while not being able to track linear process consistently), so there is a good chance that she did not receive that part of the genetics (or she is self compensating, which might be a piece of the anxiety issues).

Remember her "behavior" is first and foremost communication so it is important to view it in that light and not as an affront to you parental authority or abilities.

Here is a link to a service in my local area which is having a lot of success with kids with sensory integration challenges, and who also have some spattering of other ASD characteristics. The site has links to some good resources, and even though you are not in their area, they would likely be happy to talk with you and may even know of some resources in Canada.

http://allthedifference.org/

bookwormde

 

[persimmondeb]

I would agree that autism is over-diagnosed, but girls in particular seem to sometimes get significant sensory issues without some of the more classic 'autism' behaviors.

Competent clinicians frequently disagree over what does and does not comprise autism (the jury was out on my DS for years), but your daughter is quite obviously not quite like most other children, and it can be very frustrating not to have a diagnosis.

I would be inclined to see if I could get a referral to a developmental pediatrician, and see what he/she has to say. Also you don't say if your neurologist has a specifically pediatric practice, or not. Ones who primarily treat adults are often not as up to date on developmental issues as those who specialize.

 

[krisnme]

A lot of those behaviors sound like Anxiety. DS had a lot of these before being treated for anxiety. We finally had to use medication (I only advocate this as a last resort) and his symptoms are much better. I agree with the above poster that asd should not be so quickly ruled out.

 

[eternaldisneyfan]

perhaps social anxiety disorder and sensory integration disorder??

 

[Spoonful of Sugar]

The reasons that you have been told it cannot be ASD are completely invalid and if it is clinicians who are telling you this they are grossly incompetent.

Even if she does not meet the formal criteria for a diagnosis fir HFA or Aspergers it is clear that she has major impact from characteristics that are part of the Autism genetic set that the clinicians should be evaluating, viewing and providing clinical supports in that light.

It sound like her primary presentation at this time is the sensory differentials (sensory integration) so they should have diagnosed that as a "no brainer".

She clearly has major social variations when outside her familiar circle.

You have not mentioned any Executive Function differences (ADD type characteristics, strong image based input preference, ability to hyper focus, while not being able to track linear process consistently), so there is a good chance that she did not receive that part of the genetics (or she is self compensating, which might be a piece of the anxiety issues).

Remember her "behavior" is first and foremost communication so it is important to view it in that light and not as an affront to you parental authority or abilities.

Here is a link to a service in my local area which is having a lot of success with kids with sensory integration challenges, and who also have some spattering of other ASD characteristics. The site has links to some good resources, and even though you are not in their area, they would likely be happy to talk with you and may even know of some resources in Canada.

http://allthedifference.org/

bookwormde

No problems with executive function that I can see (assuming I'm remembering correctly from Psych 3-something ), so that's a plus. I think you're right that I should view the behaviour as communication. It's funny how that's so easy with a baby, viewing their crying as communication and not letting it bother you, but with an older child it's hard to keep that in mind. I can't wait to check out that link tonight when I have more time. Thanks!

 

[Spoonful of Sugar]

I would agree that autism is over-diagnosed, but girls in particular seem to sometimes get significant sensory issues without some of the more classic 'autism' behaviors.

Competent clinicians frequently disagree over what does and does not comprise autism (the jury was out on my DS for years), but your daughter is quite obviously not quite like most other children, and it can be very frustrating not to have a diagnosis.

I would be inclined to see if I could get a referral to a developmental pediatrician, and see what he/she has to say. Also you don't say if your neurologist has a specifically pediatric practice, or not. Ones who primarily treat adults are often not as up to date on developmental issues as those who specialize.

Yes, it's a pediatric neurologist that we see. DD sees a pediatrician too, but I don't know if she's a developmental pediatrician. Is there a difference?

 

[Spoonful of Sugar]

perhaps social anxiety disorder and sensory integration disorder??

A lot of those behaviors sound like Anxiety. DS had a lot of these before being treated for anxiety. We finally had to use medication (I only advocate this as a last resort) and his symptoms are much better. I agree with the above poster that asd should not be so quickly ruled out.

The psychologist has mentioned anxiety, and I certainly feel that I have some social anxiety as well, although as an adult, I can deal with it without a tantrum . As a baby I thought she must have some sort of sensory disorder: she wouldn't touch anything messy with her hands (now that I have a 7-month-old I am seeing just how messy a typical baby can be! ) and couldn't stand loud noises. She got OT for all that stuff, but I'm not convinced it's gone, probably just different things bother her now and I haven't figured out what does it.

 

[persimmondeb]

A developmental pediatrician is different from a regular one. They specialize in developmental differences and their diagnosis. We've never seen one, but my sister's pediatrician insisted on referring her to one since my nephew was fully literate at 3 1/2, slightly delayed on motor function, and had a first cousin with an Asperger's/HFA diagnosis. She suspected hyperlexia, which the developmental pediatrician largely ruled out. Now, we could have told the pediatrician that, but she felt a need for a specialist.

 

[Dis1978]

My son also had excellent eye contact, good conversational skills and wasn't shy with people that he knew. However I knew that something was wrong. His tantrums weren't like other kids. His behaviour was just that little bit odd. The doctors and pyschologist said that he was fine and he was just academically gifted. They were wrong.

Many years later we got the correct diagnosis after much anguish and sadness. He has atypical Aspergers with ADHD. So much could have been done to help him if we had been given the correct diagnosis early on. It would have made a world of difference. Now he is an adult there is very little help and it is way too late.

Please try to find an expert in this complex area of autism who can help you. Not all people with aspergers fit into the standard criteria but this doesn't mean that they don't have a form of aspergers. Feel free to pm me if I can be of any help.

 

[LockShockBarrel]

I honestly can't speak much to austism but I can just about 100% guarentee you she's not a bad kid

 

[cparsons1963]

I am the mother of a now 18 y.o. Daughter. When she was about 3, she had the EXACT same outbursts. Reading your post, it sounded sooooo familiar! We discovered that her problem was her lack of language development. We took her to a Dev. Pediatrician at a major university medical school. She had a head to toe work-up including OT,PT,Speech, psych, physical and probably something I've left out. They diagnosed her with Athetoid Cerebral Palsy (she was and is mobile but had delays). Later, she was diagnosed with Asperger's Syndrome. Fortunately, we kept her in every intervention offered and she is a junior in H.S.with a 4.0. Letting you know there is hope! Keep after it!

 

[chrysdrew]

I feel like I could have written you post. My daughter is 2 and her developmental Ped believes it is all a genetic problem. A behavioral psych did tell us that with girls it is especially hard to diagnose autism because they can present so differently. I too feel like if I just had a diagnosis I could wrapt head around what we are dealing with.

 

[bookwormde]

Chrysdrew

At least you have one of the best clinical facilities in the world in your city, and it may take a little time, but they will get it correct quicker than almost anyone else.

bookwormde

 

[Singledad]

I feel your pain!! I just went through a full evalution for autism and the result they told was 'we don't know for sure'. What a mess!! They couldn't rule it out, or in!

I DO see the need to get a child psychologist involved with that level of anxiety, and recommend asking for a speech and language evaluation as well.

you are far from alone!

 

[My2CrazyGirls]

See a good developmental pediatrician. They can do the ADOS and ADI (autism diagnostic observation and autism diagnostic interview). Dont give up because clearly she has something going on. I have found through issues w my own daughter that diagnosing girls is more tricky.

 

[Rayvnn]

Have you thought about Sensory Processing Disorder?

Leslie

 

[Spoonful of Sugar]

Thanks for all the feedback everyone. I was supposed to have an appointment with the psychologist tomorrow, but we are all sick as dogs at the moment, so I had to cancel. Probably won't manage to make another appointment till after Christmas, since we are going away, but when I do see her again I plan on asking who I need to see to get a full autism evaluation.

 

[MazdaUK]

DS(12) went through a full range of assessments and we were told he does not have Aspergers, but does display some autism-type behaviours. He is very bright, and we are actually thankful he did not pass the selection test for Grammar school as his "regular" school is much more aware and skilled at integrating children with all sorts of issues - he is much ahppier there at the top of his year, where they apprecfiate him for what he can do, rather than struggling to "conform" in a more pressurised environment.

My eldest DNeph(18) was diagnosed with Aspergers at a very young age (4) and had classic symptoms - no eye contact, only attaching to certain people, hating certain foods/sounds/changes in routine. He is now studying for a BTec in media and hopes to go to Uni next September to do film making. He is not confident enough to stay away from home. so he's limited with his choice, but other than that does everything other teens will do, including fronting a band!

So whatever the diagnosis - or not - my message is to just help DD make the best of herself in whatever form that takes, and you won't go wrong