Why do the doctors ignore my feelings that my son may have autism?

Megan - posted on 10/18/2009 ( 21 moms have responded )

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Blake has received services from the county for over a year now and even though he is progressing in leaps and bounds I still notice striking autistic characteristics in him... When telling doctors what I see

(i have worked with autistic people for many years) they say i am just a first time mom thats overly worried. Blake is just about to turn three nd I know that early intervention can make a world of a difference what can I do to make them take me seriously???

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Tina - posted on 11/06/2009

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i went thru the same thing and was told by 2 seperate drs that i was too young to know what i was talking about! my 2 oldest boys are 11 months apart and i noticed at birth that my 2nd son was "differnt" then my 1st son. The first dr said i was only 19 yrs old and i didnt know what i was talking about. the 2nd dr said i must have post partum depression and the 3rd dr said my son was just lazy!! when he was 14 months old i finally found a dr that took me seriously and around 22 months old he was finally diagnosed. as parents it is our job to be their voice and if you dont find the help your looking for keep looking! it takes effort and work and alot of frustration but in the long run you will find the help you need. im now 30yrs old and still have issues with the schools not taking me seriously until i dig my heels in and demand they do their jobs instead of sterotyping me. keep trying mom, the earlier kids get the help the need the better. good luck!! :)

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Colleen - posted on 11/06/2009

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Hi Meghan!

When I had concerns about my son he was almost 3yo, my pediatrician told me that I was absolutely wrong that something might be going on with him. I did some research online and contacted my school district to get hime diagnosed. I am so happy that I followed my instincts, he was diagnosed with Autism within a few months of his third birthday. I then went and found a doctor who would listen to me! Trust your gut instincts, you are his only advocated!!!

Good Luck!

Colleen

Alice - posted on 11/04/2009

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Hi Megan, you very kindly added me to your circle of friends before and I just want to follow up and tell you I hope Blake is doing well and that you have been able to get a clear diagnosis or proof that you have been worried about something that isn't there. I don't wish aspergers/autism on any family. I pray for the best for you and your family.

Amy - posted on 10/24/2009

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my sons preschool was the 1 who asked for me 2 get a assessment done on him 2 find out what was wrong. so i took him 2 my kids pediatrician. i have hade the same pediatrician for all my kids. when i told him my concerns about my son he booked him in for 1. when he went for the assessment they told me that he has autism & nw he is going to speach & ot. we just have 2 get help nw for him for his temper... im from aus & i think that with out the founding im getting for my son i would nt be able 2 get him the things he needs..

Jane - posted on 10/23/2009

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Keep a journal both writen and recorded, we have all this technology nowadays, it's time to put it to use. Start taping the things that worry you. I know lots of children that were perfect angels when seeing the dr. But your his mum and you know your son.

Insist on a second opinion we are intitled to one but rarely will we ask for it, we seem to curl up and go ok.

Tiffany - posted on 10/21/2009

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I agree with the moms here. Get a second opinion but that sometimes is easier said than done. My son started showing signs at 18 months and the doctors ignored my concerns. I ended up seeing a couple different doctors before the original pediatric doctor referred us to a neurologist even then they acted hesitant to take me serious. But eventually we got the school involved and now the doctors are finally starting to take notice. Keep going keep addressing your concerns to them. Its great that he's doing so well with the help he's getting so far!

Sherri - posted on 10/21/2009

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The most inportant thing is that schools know your concerns,,,my daughter is going to be 8,,we did not fined out till she was in headstart.not much doctors can do about it you and the school's he goes to will work together and things will work out fine for you and your son.you could talk to a preschool about it and take him teach him and love him...good luck from Sherri

Alicia - posted on 10/20/2009

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Do you need a referal to see a specialist on your insurance plan? If so just march in and tell the doctor you are absolutely not leaving until you get one. I work for doctors. Trust me they are human and as such just as prone to make a mistake as any of us. Don't take no for an answer. Don't back down. Who cares if they think you are a crazy person when you leave as long as you leave with a referal. Just go prepared. Write a log of his behaviours throughout a week period marking the ones you believe are indicative of autism. Bring articles listing the symptoms of autism too and point out to his doc how they are similiar. Not all doctors are as informed as we would like. Just because they have been to medical school doesn't mean they don't have more to learn. Record video of the behaviours if you have a camera. Bring the camera so you can turn it on and hit play. If you walk in with a plan and documentation supporting your request you shouldn't be turned down. Here's the most important piece of advice- change doctors. If yours aren't listening to you they aren't doing their job. A good physician works with his/her patients not despite them.
If you don't need a referal just go right to the source. You need to see a developmental pediatrician or ped neurologist. You can also go to a child psychologist. Just make sure the professional you choose has experience assesing children with autism and other developmental problems. The autism society of America can help you find a list of providers in your area doing autism assesments.

Keep fighting, you'll get there. Good for you for not giving up.

Vanessa - posted on 10/20/2009

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find a developmental pediatrician or take him to a child psychologist. They will give you a diagnosis. I had the same issue with my pediatrician and my son has pdd/nos. Always listen to your gut instinct. I don't think you need a referral for early intervention

Elisabete - posted on 10/20/2009

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i dnt know maybe they just think they know better than us .i have an autistic son and it took me almost 2 years to get a diagnoses and my daughter is 7 and i know somethink isent right yet they always brush me off all the time ive been at it for 4 years with her .they think sh is normal yet she talks like a 4 year old

Katherine - posted on 10/20/2009

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Doctors WONT take you seriously... especially at that age... The debate over vaccinations imply that the doctors are responsible for your sons autism... (which actually makes it the drug companies fault - (and also let me interject I am NOT advocating no shots... But PLEASE ask for the shots to be individual shots... not the combo dapt - the enzymes that hold together the shots is the suspect)... SO im saying go to your school district for diagnosis... go to the childrens admin for your county or city... see if you can receive social security for your son... BUT don't take offense... your Ped is interested in your sons PHYSICAL being... not mental. find someone who will help! make the calls!! there is LOTS of help out there!!

Erica - posted on 10/19/2009

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Get a second opinion, switch doctors....i thank god every day my doctor listened to me. My son was diagnosed with autism @ 22months old because she took in to consideration i have been around children with autism before (helps he was my 3rd child also) My brother and my cousin are autistic. My sister worked with autistic children for years...we all knew when he was little something was off

Amy - posted on 10/18/2009

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he was diagnosed with autism going on 2yrs nw..

sametimes it is so hard with him cause he has a thing with hiting. throwing things at other kids.. we r just in the middle of taking him 2 a place where they can help with his temper,, to stop him from hitting other kids..

i

Lori - posted on 10/18/2009

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Request a referral to a developmental pediatrician and/or a pediatric neurologist. They can do an autism evaluation. My youngest son has been diagnosed with autism by three separate professionals (a developmental pediatrician, a pediatric neurologist, and a pediatric psychiatrist), yet his regular pediatrician is still reluctant to believe it. He says he will "grow out of it," he is "just bratty," etc.

Amy - posted on 10/18/2009

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hey

i knw what u mean it took for me 2 get his dr 2 get a assessment done on my nw 4 yr old son to find out that he hade autism..

Alison - posted on 10/18/2009

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You have to trust your instincts as a mother, it is your child. I agree with the other posts about finding another pediatrician. I am an ABA lead therapist in SC, I also have 2 children.



Have you kept a journal of your concerns and when they occur? You can share the entries next time you go to the pediatrician. I think finding a doctor that will support you and your family will help out too. Also do you have to have a referral from your doctor for a specialist to evaluate your child? What do the therapists providing services to him from the county say about your concern? Could they write a letter to your doctor addressing the concern?

Alice - posted on 10/18/2009

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My grandson has very mild asperger's, attention defecit, and vitaligo. He's now 13. We thought for a long time he was just quiet. He doesn't like to be hugged, kissed or touched. He needs his own space. My daughter finally got a diagnosis when she took him to a childrens psychologist for testing. After the diagnosis she put him in private school where the classes are smaller and he has progressed in leaps and bounds. He was tormented in public school by the other kids. Some made fun of his skin spots, some made fun of his anger issues, etc. He's learning copeing skills and has made friends now. If there is to be no cure, at least we have an obligation to get the diagnosis and follow through with what each child needs. By the way, my grandson was a "normal" loving, funny, active little boy until he got his necessary shots. Good luck to you.

Sheila - posted on 10/18/2009

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What are the characteristics that you see?



I too worked with children with autism, and my doctor's first response was that I was worrying too much and "reading too much into what I was seeing" due to my professional background. AND I have to say, my son never displayed his behaviours at the doctor's office...he loved the guy! But I went the early intervention route, (a wellness/developmental screening that they offer through Community and Social Services in Ontario) and they started us on the road to assessment. (In Ontario, you can go through the referral through Preschool Services...right up until the ADOS test needs to be "ordered" then you need the ped. doc).



I agree that you need to get a second medical opinion (if that is an option in your area) In the meantime, your knowledge is your best asset. Continue to do whatever you need to do without a diagnosis...an OT report will not diagnosis, but an OT will tell you what red flags they are seeing...this might help. In my area, this costs about$200-$400.



Good luck!

Stacey - posted on 10/18/2009

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I know how you feel, we started investigating things not long after our son turned 2, he will be three in March of next year and at this stage we will be lucky to get him assessed before the end of the year, the services and help for Autism seem to be very slow and it is very frustrating. My only advise to you is to get a second opinion, ghange Doctors, the other thing that I am doing to deal with it on my own while waiting for appointments to come round is to keep reading, try things, we have our son on the gfcf diet and have seen some improvement (we also put him on this diet because he has obvious digestive problems) and this is still a work in progress so I concentrate on that, we have also been using picture cards for food and drink (only a handful of options) and then I found a site where you can buy the proper PECS cards/ books/ schedules etc, the book has thousands of cards and I'm very excited to buy them and concentrate on expanding on something that he seems to be grasping and enjoying, so I will put all my focus and attention on these and concentrate on what I can do as his Mum, at home, without the help of the pros. Find what you think will work best with your son and throw yourself into that to make yourself feel like you are using time well and not wasting time and it might help take your mind off it a little, but keep persisting for a diagnosis too. Good luck.

Lisa - posted on 10/18/2009

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Time for a new set of eyes looking at him. Also, go online and complete an autism assesment, print it out and take it with when you go to the next appointment with your doctor.

Judi - posted on 10/18/2009

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Change doctors, ask for a second opinion. Go with your gut. Speak with your sons preschool, day-care. Video him playing and watch it back yourself.

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