So is my neuro right, or is everyone else?

Stacy - posted on 01/25/2011 ( 25 moms have responded )

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We had our first meeting with a pediatric neurologist yesterday. The doctor comes very highly recommended, but I did not have a great experience. When we arrived, he was already 2 hours behind schedule, which turned into 4 hours by the time we were seen. We had a 3 PM appointment and we finally got into a room at 7 PM. So everyone was tired and hungry. He spent 25 mins with us - testing Jax's reflexes, having him perform hand movements, etc. Did not ask much about behaviors at all. He finally sits down and says he doesn't believe in autism or spectrum disorders. He thinks there are a lot of brain issues that we don't understand and that ASD is just a nice catchall. Okay, I can buy some of that.

He goes on to say that Jaxson does NOT have Aspergers based on 3 things. First, it's a right lobe disorder which affects the entire right lobe of the brain, meaning many coordinations would be off as well. Jax is fine there. Second, Aspergers kids have no sense of humor at all. Jax laughed when the doctor tapped him on the nose with the reflex tool, so that rules out Aspergers. Finally, Jax was having a whinefest (not a tantrum, just being tired/hungry/whiny) about a toy that DH had taken away when the doctor called him over to see him. Jax turned off the whine and hopped into the chair. The doctor said Aspergers kids can't transition like that. He thinks that Jax has an "immature frontal lobe" and will likely catch up socially with the other kids before age 9 (he's currently 5).

He went on to say that most things noted as Aspergers - the social issues, the lack of inhibition, the focus on ritual - are all things you'd see in a 2 yr old. The speech and analytical parts of the brain continue to grow, so the child is very advanced there. But s/he will still behave like a 2 yr old socially.

I'm not seeking a label per se, but I am wanting to know what I am dealing with here. If it's Aspergers, that's a completely different territory than an immature frontal lobe, which this doctor said we should just take a "wait and see" approach to see if he matures. Which is fine and dandy - except my child has no friends at school and is constantly getting in trouble. His principal and teachers want more than to just "wait it out."

I am wondering what everyone's take is on this doctor's observations. This man is VERY highly regarded, has been specializing in these types of disorders for almost 50 years. But we have seen a psychiatrist for a year (1 hour sessions at least once a month) who says he has Aspergers. He's seen a LCSW for 6 2 hr therapy sessions who said it's Aspergers. He's currently seeing a licensed therapist for social skills who says it's Aspergers. His teachers (past and present) and his principals (past and present) say it's Aspergers. His occupational therapist (a PhD who has analyzed a 2 hr video of him) says it's Aspergers. So do I take the advice of one very highly regarded doctor who has seen him for 25 mins (and NOT in a school setting, where his issues really come out), or what I already know based on several people who are experienced (but not as much so) but have seen Jaxson many, many times and in different situations? We still have one more doctor to see - a developmental pediatrician in March - but this has definitely thrown us for a loop.

Stacy

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Kimberly - posted on 02/01/2011

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Stacy,
As far as I know, ASD and sensory processing disorders go hand in hand. When I had my son tested for sensory processing disorder, the developmental pediatrician referred us to an OT who specializes in sensory processing disorder. Currently, Sensory processing disorder isn't a medically recognized disorder, so it is unlikely that a neurologist will diagnose anyone with such (unlike ASD/PDD/Asperger's). That doesn't mean that a good doctor won't take sensory issues into account, though. If you believe there are sensory issues in addition to those related to ASD, then ask your OT for a referral to an OT who specializes in testing for Sensory Processing Disorder. Good luck with all of this and as Leigh-Ann said, always trust your instincts. YOU are the expert on your child no matter what!
Kimberly

Sherry - posted on 02/01/2011

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A neuro that tells u he doesnt believe in Austism defeated u immediately. he is not going to give a diagnosis that he believes does not exist. u should see someone else. no one seeks lables, but those labels certainly do help with getting the services and resources that ur son needs. i have a 7 year old with severe autism and i bet if that doctor spent 24 hours in my home he would be a believer!!

Laura - posted on 02/01/2011

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I will tell you a couple of things. My son, 7, has Asperger's syndrome. He has a sense of humor........he is hilarious. My son can catch a ball no problem. My son interacts with his peers, just not typically to a train eye. It sounds to me that the neurologist had already decided before he met your son......if he doesn't believe in the "whole ASD thing" (Obviously the brain is involved....but that isn't the only thing) Specialist tend to see their specialty and nothing else. Hope this helps :)
PS Distraction (hey, come sit in this chair!!) is actually a tool to turn off the whine :)
Does he have sensory issues and special interests?
I personally feel waiting it out is dangerous. We were told to do that. I WOULD GIVE THE WORLD to have the knowledge I have now then. My son would be so much higher functioning. Don't wait it out. Get him as much therapy as you can. Just my unhumble opinion :)
So his comment is self negating.

User - posted on 01/26/2011

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Hi Stacy,

A little over a year ago, I had to have an MRI...no big deal now, but there was a bit of a concern.

Anyways, I was sent to a neurologist in Toronto. He was very informative, etc...went through why I was there. So, as I sat listening to this dr explain everything was okay (relief!) I said, I know this is not why I am here, but my son is living with autism. First, very busy dr...never did he rush me and he said, what would you like to know. So, I asked about the brain and autism. There is no difference in the brain of an individual with autism and your brain, he responded. A person living with ASD has a perfectly healthy brain and you will see no difference (compared to someone living with FAS).

I have never, ever, heard this frontal lobe theory before. I have attended numerous workshops, both as a parent and as an educator...never heard that one.

As well, to make a blanket statement that children with Aspberger's don't have a sense of humour is an incredibly rigid and outdated stereotype. Children on the spectrum are capable of humour and laughing and having insights...sometimes very differently from others not on the spectrum...but still!

He might have 50 years experience, but he also sounds like he's "been there got the t-shirt". A half -hour "exam" is nowhere near what is needed for a diagnosis of any spectrum disorder. My son went through a developmental screening, two assessments, then a four person team assessment (where all four had to agree to put him forward for the ADOS), and then finally an ADOS that was scored by four different professionals (blind score)....

I would get a second opinion.

Sheila

Jan - posted on 04/22/2013

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my moderately autistic (PDD-NOS, ADHD, ODD, SPD) 9 year old has a sense of humor, it's a little different than most kids his age but it's there.

I think your child could have toe walked and hand flapped in circles chanting and looking at the floor for the entire examination and the neuro still would have said it's not autism because he told you straight out he doesn't believe in autism. If I were you I would move forward and treat your child as if it is autism because in the long run if it turns out to be something that he's going to grow out of then he will grow out of it and all the therapy will have been unneeded but not harmful either, if you sit and wait to see if he will out grow it and it turns out he doesn't then you have wasted valuable time.

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Andrea - posted on 04/21/2013

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I had a specialist pediatrician in child development who was very well respected tell me that my daughter could not be Autistic because she was social - less than 2 years later, a a neurologist, who had her DSM manual and checklist in hand told me that she was Autistic, and just because she is social, does not mean she is appropriately social.

You have a lot of people who know your child well, and have the same beliefs. I would go with whom you trust.

As far as "well respected doctors," we have a psychiatrist in our area that is "well respected", but gives EVERYONE a Bipolar diagnosis...doctors have the ability to have hang-ups that prevent them from giving good, effective treatment :)

Michelle - posted on 07/08/2011

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@ Jen G. My daughter's DAN! Doctor is not a quack! He was the first doctor that actually wanted to order lab work (urine & stool) to see what was going on with her systems. Nothing invasive about it!!! Her stool showed that she was very imbalanced! She had extremely high levels of yeast and bad bacteria/flora and she was lacking all the good bacteria/flora We have started a treatment for this and she has shown improvements in eye contact, interaction & speech!!! DAN! doctors do know what they are talking about and only want to help! Jen you should do you home work on quackwatch.com!!! It is run/owned by a man that is not a doctor and is only trying to make $$$ by suing doctors and organizations and has yet to win a case!

Quackwatch is a popular skeptic website on alternative type medicines. They have been critical of many type of complimentary therapies including homeopathy . They have their own website dedicated to criticisms of homeopathy called www.homeowatch.org. There are 25 websites run by the quackwatch organization.

Dr. Stephen Barrett owns these websites and masquerades as a consumer advocate and as a doctor. Barrett has sued 41 people and/or companies in many different alternative medicine type of professions such as chiropractic and homeopathy. He has not won a single case to date but he continues to file lawsuit after lawsuit. In court, it was revealed that Dr. Stephen Barrett is not even a licensed medical doctor. He had failed the psychiatric exam for certification.

Many people believe quackwatch is run by a certified doctor and that information posted on these sites are factual. Dr, Barrett has spoke on cnn and the today show about quackery. Stephen Barrett has no formal legal training but claims to be competent in medical law. Courts found quackwatch websites to be biased and unworthy of any credibility.

Stephen Barrett latest trial loss happened in his own hometown in Pennsylvania. He was suing a chiropractor for defamation. The judge threw the case out entirely after hearing that he had already sued 40 other people and organizations. Quackwatch is having a great deal of financial issues. Certainly suing so many people could not be cheap. In 2008, his corporation in Pennsylvania was dissolved. He has moved to North Carolina. The quackwatch websites take donations. Since they have no corporation, no one is sure where this money is going. The website says these donations are going to website operations and research activities. What type of research is this dissolved organization doing? Does research activities mean frivolous lawsuits?

Brenda - posted on 07/06/2011

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No sense of humor? Um, my aspie laughs all the time. I think that neuro is full of crap.

Christa - posted on 07/06/2011

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Stacy,
Do not let one know-it-all refute what you and all of the other people who actually know & have been working with your child already know. I am a parent and a professional & no one can tell jack about a child in 25 minutes. Was your child checked for reflexes that should be there at his age, or reflexes that he should no longer have and are developmentally inappropriate. Infant reflexes in older children - your OT or PT knows what to look for - impede balance and movement and are very common in spectrum children. Also, often times, even well-meaning and highly regarded professionals are looking for red flag major autism & don't get the higher functioning spectrum issues. It sounds like your child is lucky to have you as a parent & that you are leaving no stone unturned to find the appropriate help. Hang in there!

Kathy - posted on 02/03/2011

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We had a similar experience with our ped/neuro. Our Grandson had already been "diagnosed" by the Early Steps program here in Florida. This man came highly recommended, (not by Early Steps) head of the department at an area Children's Hospital. Very singular minded, uncompassionate, PhD, I believe these Doctors sometime get quite full of themselves. We came away from that visit crying and frustrated. Find another ped/neuro. or call your State/County for area Behavioral Specialists, even call the local school district and see who they can recommend. Our Grandson started at age 2.5 with Early Steps and began school with the correct therapies at age 3.

Stacy - posted on 02/02/2011

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Deanna - we did see the neuro in San Antonio! It was Dr. Seals - is it the same one you saw?

As for DAN doctors - it's a moot point. The closest one to me is 3 hours away and it's Wakefield's clinic, who I do not respect nor trust. The next closest is 7 hours, which is not feasible. So I really need to look locally for help. I have high hopes with the dev pedi - she has 2 ASD kids of her own.

Jen - posted on 02/02/2011

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Do NOT see a DAN! doctor. Go to quackwatch.com and investigate "alternative" medicines and procedures before you do anything invasive or dangerous to your child.

Meanwhile, I will tell you that our family went through the same kind of thing with our first pediatric neurologist. He refused to give us the diagnosis until another doctor first did.

The pediatric neurologist we finally found who was excellent and helpful was recommended by a friend whose child also had autism. In fact, I found out at a support group meeting that the first pediatric neuro we saw had a reputation in the community for minimizing autism.

Best of luck! You are not alone.

Michelle - posted on 02/02/2011

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Find a DAN! Doctor and get him tested (urine, stool, blood work, heavy metals, yeast and so on) We took are 3yr old daughter to a Developmental Specialist (referred by her Pediatrician) He looked at her for 20min and said she had ADS and wrote her scripts for OT & Speech Therapy(she is non-verbal) and drew blood for genetic testing(fragile X) but that was it. I asked him about alternative treatments like diet and detoxing and it was like hitting a brick wall. 2 day later I found a DAN! doctor and made an appointment. I have been reading everything I can about Autism and modern research yields there are major but subtle physical medical conditions that are the underlying causes of the neurological problems. In a lot of cases if the physical problems are addressed the neuro problems diminish or disappear. Find a DAN! doctor to find out what is really going on!
Therapy will help but it is like putting a band-aide on a bullet wound without removing the bullet! I also recommend reading this book (written by a Pediatrician turned DAN! Dr. who daughter has Autism and has been recovered through biomedical treatment) http://www.juliebuckley.com/
Good Luck & God Bless you on your journey!

Renee - posted on 02/02/2011

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Frankly I'd see another neurologist or a developmental pediatrician. A medical doctor who doesn't believe in ASD give me a break, how much research does he need to believe in it? I'm not convinced he's even qualified to see patients, a doctor who keeps you waiting through dinner to evaluate a small child, I would have left 3 hours ago and rescheduled. Autism/Aspergers kids do have a sense of humor, mine does. Good luck!

Donna - posted on 02/01/2011

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OMG, this makes me furious! Do NOT listen to this guy, I don't care how well regarded he is. You can NOT eliminate Aspergers just because your son showed a sense of humor. Our 15 year old has always had a sense of humor, not a normal sense of humor, but she thinks it is. If all those other people see it and you see, he just didn't see it that day.Our daughter has ADHD, is bipolar and has Asperger's. The bipolar and ADHD drive a lot of her impulsive behavior, but the Asperger's prevents her from understanding the social consequences of her choices.

Deanna - posted on 02/01/2011

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Hi Stacey.
This neurologist your talking about sounds very similar to the neurologist my son sees. He also does not believe in Autism, but he never went so far as to say he doesn't have it. He diagnosed me son as possibly having an underdevelped fronal lobe. We have had him diagnosed elsewhere as having high-functioning autistic disorder and we go based on that. Do you happen to live in the San Antonio, TX area? I was just wondering if perhaps this was the same neurologist or just another one who thinks similarly.

Tammy - posted on 02/01/2011

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Wow, this sounds familiar in so many ways. I do believe that autism/asd/aspergers is over diagnosed these days, as are many medical conditions. So, no longer are we dealing with Autism, but Autistic Spectrum Disorder. What it really means are that there are so many different ways that Autism presents itself, yet the children have some very distinct mannerisms and difficulties that are quintessentially marked as "Autism" that even the docs can't agree. My daughter is 14, has been diagnosed as PDDNOD, Autistic Spectrum Disorder, ADD, Asperger's, Executive Function Disorder, Sensory Integration Disorder, Language Delayed, Learning Disability...I could go on. Here's the most important thing - teachers and principals are not qualified to make this diagnosis, if they were they wouldn't be teachers and principals. This is what I did - and it did help...You know he has some social inabilities, so seek out a private therapy setting that has social skills training for kids with disabilities and let him learn some strategies. When he has a play date, observe and ask this psychologist for help with discussing the situations that come up during play time with others so you can help him develop more strategies. Set aside an hour or two a week and play a game of his choice with him, and discuss behaviors that would alienate other playmates in simple terms so he gets the hang of being social. As he gets older, it doesn't matter about labels - but it might help you get services through the school system that your child needs to succeed. As River Phoenix's character in "Stand by Me" said to his best friend (who had asked "am I weird?"..."Sure, but everyone's weird!". We just have to find weirdo's who are like us!

Stacy - posted on 02/01/2011

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Thanks for all the replies! We were seeking help because I believe in my heart that there's more going on here then just Aspergers. I think there's a sensory processing disorder as well, which is why we were given the referrals by his primary pedi. We already have an Aspergers diagnosis as far as school interventions are concerned, so that's fine - but to have that diagnosis, having read up on Aspergers for months now and say YES, that is my son - and have all I've known turned on its head in a matter of 25 mins by a "professional", it's very disheartening! We have a follow up with him in 6 months (1st appointment of the day this time), and by that time we will have more information (hopefully) from the dev pedi. I just want to make sure we're doing all we can. The school is helping him tremendously, he has a social skills group and Floortime with an OT weekly - and both of those apply to both IFL and Aspergers. But if there is a sensory processing disorder as well, there are additional steps that need to be taken. The pedi neuro didn't address that at all.

Leigh-Ann - posted on 02/01/2011

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ALWAYS trust YOUR instincts as a mom. Have him seen my another pediatric neurologist. Did the neurologist have you fill out a Connor's scale? It's just a set of questions about your child and his/her behaviors that give a doctor a picture of whether it's Asperger's. Our neurologist had us fill one out and based on that, her physical exam and her observations of my son while in her office, was able to diagnose him as autistic. If you need a medical diagnosis for insurance or whatever, see a developmental pediatrician or a child psychologist. Either one can give a medical diagnosis of Asperger's or autism.

It sounds like you've got a lot of great interventions in place for him already. Even if it's not Asperger's he will benefit from the therapy and the OT. What state do you live in? Depending on the state you live in, the school district may get involved and do their own testing. My friend's daughter was diagnosed at 4 when she was acting out at the private preschool they had her enrolled in. The school district stepped in, tested her, found she was autistic and she was placed in the district preschool. She's doing pretty well now in a mainstream classroom.

Good luck!

Kimberly - posted on 02/01/2011

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Stacy,
In your post, you don't say why you are going to the neurologist, developmental pediatrician, etc. It sounds as though, with everyone who is currently working with him already in agreement, that the neurologist's opinion doesn't matter all that much unless you need an official doctor's report giving him an ASD diagnosis to get services. I would say that as long as your son is getting the services he needs to make progress, that you could keep both perspectives in mind. If your son's difficulties are due to an "immature frontal lobe" then the services he's getting aren't going to hurt him and will only help him and it may be possible that as he matures the diagnosis will be refined. That being said, however, if you do need a specific diagnosis to get services to help your son, then by all means seek a second opinion and/or wait to see what the developmental pediatrician says. If you do make another appointment with a neurologist, you might want to consider asking for a morning appointment so that this experience doesn't happen again.
Kimberly

Shasta - posted on 02/01/2011

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I agree. I felt the same way when I read it as well. If the doctor were to spend the time in the home of the patient, he would soon become a believer. I am just so shocked that a "professional" in that specialty could be so closed minded when there are obviously cases supporting it everywhere! Find a new neuro. You unfortunately got a DUD.

Genie - posted on 01/25/2011

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I suggest going to a neuropsychologist. My experience has been that neurologist look for malfunctions in the brain and at his age, your son might not be big enough for the distinctions to be as noticeable as with an older child. A neuropsychologist will do testing that measures social interaction, IQ, coordination, visual and audial learning skills, memory and things like that. The information you get can also help if there is a need for an IEP or 504 when he gets into school. Doctor's don't know everything and specialist sometimes think they know more that everyone else.

Shasta - posted on 01/25/2011

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If I were you, I would seek consultation from another neurologist as a second opinion. My son has Asperger's and a wonderful sense of humor. Our neurologist said that no 2 cases are alike. He should have also seen you for much longer than that. Our appointment was almost 2 hours and extremely thorough. He took a complete history of even his father, his brother and I. To say he doesn't believe in Autism spectrum disorders is absolutely absurd. I am sure you know in your heart that it is Asperger's as well. I know I did. You need to get a new doctor to see him. Hope this helps.



I should also point out that the Neurologist we saw specializes in Children. I also just found out from someone else that this particular doctor also has Asperger's. Gives me hope for my own child that with all the difficulties that he has faced in his life, he has become very successful with alot of work.

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