[bumpersmom]

My ds was two this year. I KNOW there is something wrong with him. I think it's autism, because I used to work with a woman who had an autistic son and mine acts the same way he did. I'd call her but she moved away. I took my boy to the pediatrician who said he was just fine. My boy's behavior got worst, so I took him to a neurologist. She said he was just fine too. I want to believe them but.......he's not. I come from a big family. I'm the oldest of seven. I know what a regular kid looks like, and he's not like that. Have any of you been misdiagnosed (your kids

) ? What did you do? My husband says, they must be right--two doctors can't be wrong.

:

I think he's wrong.

 

[iris0110]

When Ds first stopped talking at 18 months I took him to see the ped because I was worried. She said don't worry about it. For six months I took him back and forth and each time she said don't worry about it. At 2 she reffered us to the ECI program. Then after six months using ECI and no improvement I took him back, She looked at me and said "Something is wrong with your son."

So she sent us to a pediatric neurologist. Well the neurologist said nothing wrong but speech delay and sent us for a ton of tests. So right now we know that our son does not have a neurological disorder, or a genetic disorder, but he does have an expressive speech delay. So there you have it, he was infact misdiagnosed for 1 yr. Sometimes I think peds drag their feet while a child is really young because they don't want to jump to any conclusions. I recomend either trying another nuerologist, or maybe a developmental pediatrician. Sometimes a developmental pediatrician is more willing to look at all developmental issues as well as behavioral issues before making an assesment. And you may eventually find out that there is truly nothing wrong with him, my son has some really weird behaviours, but that is just because of his temperament, it has nothing to do with ASD. Good Luck and I hope you can find some answers.

 

[thoesly]

In real life, I've found this to be pretty common when dealing with developmental issues. I spent about a year arguing with my former pediatrician about whether or not something was wrong with my oldest (he lost speech, eye contact, etc). It wasn't until he was three that I found out about Early Intervention, Child Find, etc. They were the ones who determined autism. Several of his peers had a similar experience. One mother of 5 was told that her 4th child was repeatedly banging his head against a wall because he was a boy and all of her parenting experience had been with girls. Medical doctors miss this area a lot (and, to be fair, this isn't really in their realm of expertise unless they have a special interest).

With my daughter, I bypassed the pediatricion and went straight to EI. My daughter made good progress with them, but after a year, there was still something wrong, and EI helped me find a good pediatric neurologist who gave us the answers we were looking for. The main difference between EI and my pediatrician was that EI never downplayed my worries, and they admitted when they were out of ideas and thought a new approach might be in order.

I have never met anyone with a child who was assigned a label that didn't fit, though I have heard such claims made online, especially for autism, Asperger's, and ADD/ADHD (nothing concrete, though -- just friend-of-a-friend type stories and personal opinions about children that are not theirs). It will be interesting to see what tales others have.

 

[grnbn76]

Not posting as parent of special needs here, but as older sister of special needs.
My brother has been given every diagnosis possible...literally from completely normal/parents stink to mentally retarded, Autism, Aspergers, and a variety of other diagnoses. And the vast majority of them have been changed. For us, ASD doesn't stand for Autism Spectrum Disorder, they stand for "Alphabet Soup Disorder", because that's what my brother has. If it has initials, he's either been diagnosed with it at some point, or they think he really has it still.
Keep in mind that my brother is 22 years old. When my parents first started on this very long journey, there early intervention programs didn't exist. They relied on their ped (who was very big into blaming everything on our parents...so he hasn't slept for 4 days straight? That's your fault!). They finally (when he was 3 or 4) met with a child psychologist who agreed that he had problems that weren't parent caused. First it was ADD, then ADHD, then they added and subtracted disorders for the next 15 years or so.
He still has no "formal diagnosis" beyond ODD, RAD, mild MR, mild DD, some speech issues, OCD, and a disorder causing him to have violent tendencies toward appropriate authority figures and select inappropriate authority figures for himself...I just can't remember the initials and don't have time to pull out my paperwork.
My parents are so jealous of parents today...there are so many intervention programs available that just weren't there 20 years ago. Today, my 22 yo brother has the physical capabilities of a 12yo and the mental capacity of an 8 yo. And to this day, we don't exactly know "why". The best we can do is that he was 3mos premature, weighed 1lb, 15oz, and had a brain hemorrage at birth.
If you think something isn't right...keep trying to figure it out. Get a second opinion, and then get a third. Keep looking. While it is possible to grow into an adult without a formal diagnosis, it's definately the more difficult path to travel.

 

[emmasayshi]

My son was diagnosed as mentally retarded twice but he's not he has autism. My daughter boy oh boy. My daughter I was told was normal fine spoiled lazy and then I was told that I was overprotective didn't talk enough and maybe was munchausen by proxey meaning I made it up to make myself look good.
I found a great doctor who diganosed her as autism moderate and put me in touch with Dr. Rimland at the Autism research institute. He is just so great and helped us so much. We went on the dan! Protocol and my doctor helped us a lot. When we ran out of money for tests we just did what the institute said and then gave the same diet to my son. Now they are both talking and do well especially my daughter in school.
I have a learning disability. It is hard for me to type like this and get it right. I have given up on using commas because I alwyays put them in the wrong place and nobody understands them.
If you know what autism looks like you are lucky and probably right. Good luck to you and your babe and don't get the blues. GFCF is like a magical formula and all the vitamins work especially B6 and Magnesium and DMG. The week we gave them to my son he started talking. Have hope and don't let go. Your husband might not appreciate how brave you are but I do.

Don't give up.

 

[indiegirl]

At the age of 2 I brought my dd in because I thought she should be talking more. Doc said she was fine. At 2.7 I did it again and demanded an evaluation. She agreed and my dd was diagnosed with moderate hearing loss in both ears. Her speech delay has caused serious issues and we've lost so much time--but we are all working hard (Violet is working the hardest!) at making up for lost time. If you were to meet my dd, you'd wonder why she talks like a 2 year old at the age of four. Then you'd be amazed by how far she's come in one year.

Jesse

 

[Goldiemom]

My two cents. My ds has two dx's so far. Autism, and MR. I am hoping that with intensive therapies starting soon that the MR dx will be changed. But I had concerns about him from the time he was about 18 months old. Told two different dr's that I had concerns about his speech and got told that boys often learn to talk later than girls. Then when he was 2 1/2. I took him to see him ped. because I felt that he had ADD and was told that he wouldn't be dxable until he was 3, then they could put him on meds. I was told then, that he had the energy of a 7 y/o trapped in a 2 1/2 y/o's body. But otherwise I was told that he would be just fine. At 3 I still had concerns about his speech AND the ADD tendencies, and by then bad sleeping habits, and was told that because he couldn't talk well that he wasnt testable {go figure!}. At that point I started looking into some kind of EI program through the schools. So I had the ped AND the Health Department give me referals to that. It took them almost a full year to get him into a program and even then it was only on an evaluation basis, cause he wasn't testable {no attention span, or ability to communicate, bad eye contact, that sort of thing}. As his Mom I was still clueless and just wanted answers for what was going on with my boy! It was only after his 4th birthday that it was suggested to me that he might have Autism. Of course I freaked, and was like well why wouldn't someone in the past 4 years have told me some so serious like that could be my sons problem? So I know exactly where you are coming from.

 

[alternamommy]

We are going through this right now with my DS who is almost 8. He was diagnosed bipolar at age 6 and it seemed to 'fit' him at the time. DD is bipolar, as well as many many family members. Right now I don't think he's got BP, but the psych guy we see here was not receptive to hearing that. I said to him, "I want to reevaluate DS's diagnosis, I think he may fall more into the asperger's spectrum". Psych said, "But asperger's is not a mood disorder". Me: "I know that but it was my understanding that autism, aspergers, bipolar and ADHD all sort of having overlapping symptoms."

He then proceded to lecture me for ten minutes on the fact that autism, aspergers, bipolar and ADHD all sort of having overlapping symptoms. Grr.