How did your child get diagnosed with Autism?

Nik's Mom

DIS Veteran
Joined
Dec 22, 2001
Hi,
My son has been diagnosed with PDD. His teachers feel that he is autistic and would benefit from an autistic classroom. I have tried his doctor, and neurologist and they say PDD because they aren't sure (since they don't have experience with autistic children). So what do I do? How do I find someone who has seen autistic children? I don't want to take the word of a doctor who has never dealt with an autistic child! How did you find an experienced doctor/psychologist or whoever, who could correctly diagnose your child. My insurance company didn't know who to recommend either. Help!
 
I'm sure you will get some help from people with children with autism spectrum disorders, but I know The Autism Society of America has a very good website. If the link works correctly, it will take you to the resources page, where you can access a search for all sorts of services, including doctors.
A very interesting book that I read recently (actually, I bought it for my mom for Christmas and I have to admit I read it) is Thinking in Pictures and Other Reports from My Life With Autism by Temple Grandin. She is a high functioning woman with autism who is a very successful designer of equipment used in handling animals. I read it years ago and I bought it as a gift this year for my mom to help her understand my nephew with Aspergers.
 
It sounds like you needs a developmental pediatrician. They specialize in child development and are trained in testing. These docs are usually located in large cities and there my only be a few in your whole state. If you have a children's hospital near you, they may be able to refer you.

cathy
 
Just wanted to pass along a :hug:

We got a referral through Speech and Hearing... to Early Intervention, then onto an "assessment team"...made up of a pediatrician, speech pathologist, child psychologist, early interventionist, and an occupational therapist:)

We're in a VERY rural area, and my next stop would have been the nearest children's hospital.

Let us know what happens:)

:sunny:
 
Nik's Mom said:
Hi,
My son has been diagnosed with PDD. His teachers feel that he is autistic and would benefit from an autistic classroom. I have tried his doctor, and neurologist and they say PDD because they aren't sure (since they don't have experience with autistic children). So what do I do? How do I find someone who has seen autistic children? I don't want to take the word of a doctor who has never dealt with an autistic child! How did you find an experienced doctor/psychologist or whoever, who could correctly diagnose your child. My insurance company didn't know who to recommend either. Help!

We have an educational diagnosis through our school district of Autism Spectrum Disorder. It's listed as one of his disabilities on his IEP (Other Health Impaired is the other one). Maybe your school district has a regional autism service that can come to the school and help to determine the need of your son. Ours came and observed our son in various settings at school on a couple of occasions, interviewed the teachers and me and had everyone involved with him fill out some eval forms.

Our developmental pediatrician wasn't much help with the diagnosis but the school district has been the one to help us much more.

Hope that helps!
 
Thanks everyone for your words of comfort. My son's schoold district will not make a diagnosis, even though they feel that he is autistic. They say the diagnosis must come from our own doctor, psychologist, etc. I did speak with a psychologist who said she has worked with autistic children. I have an appointment with her next month. Hopefully she can help.
It's so frustrating that not that many doctors, etc know about high functioning autistic children. I live in the Los Angeles area, and still have had a difficult time getting help (that is covered by insurance).
 
I had a very simular experience. My son is 10, and he was 8 before we got a good diagnosis. PDD for a few years, then the school phyc. said it was asbergers, but a few criteria didn't fit. Then we found a neurologist who at first said autism, then changed his mind! Finally found a great neurologiest who finally diagnosed him with high functioning autism. It is difficult to get a diagnosis if your son has a more mild case like mine does. You have to be persistant! We went to a phycologist, who was a joke (my son has difficulty going to sleep, he actually suggested counting sheep!). Good luck-you definetely need to get accomidations for him at school no matter which way you go, either special classes or mainstreaming.
 


sparki said:
....(my son has difficulty going to sleep, he actually suggested counting sheep!). ....

Our kids have this issue as well...so we bought a sound machine..has a dozen or so different sounds - white noise, ocean waves(their fav!!:)) etc, etc.

Worked like a charm from the first night::yes::

HTH!

:sunny:
 
There are so many parts to autism; some talk, some don't; some are nice, some are violent;the list goes on and on. I started with an evaluation from a psychologist. Our first family pediatrician fought me all the way, saying "Just wait until he's 3, he'll come out of it". When I took him back later, rather than at least apologize for his lack of concern, he said "I wish there was a pill we could give for that". If you think there is something wrong, don't give up until you feel you have an accurate assessment.
 
I have 7yr. old special needs twins. My ds is high-functioning autistic.
He was assessed when he was 2 thru our school district. In fact, I was getting my dd assessed at the time for early intervention because she had some mod. to severe delays due to her heart surgeries and hospitalizations. When she was getting assessed for early intervention thru our school district, my ds was also getting assessed (because he is a twin). The play therapist thru the early childhood program thru our school dist. noticed my ds was not responding to noises and he was not aware of situations during the assessment time. So, he also qualified for early intervention and play therapy.
When he turned 3, he was diagnosed with high-functioning autism and PDD.
My twins both went thru the early childhood programs at school.
Now, my twins are mainstreamed in a regular 2nd grade clasroom( different teachers) and they have a teacher's aide in their classrooms. My ds is doing extremely well in school. IMO, I think he is more aspergers. Both my kids have an IEP.

I know in my area, there are 2 school districts that are really in tune with diagnosing autism at an early age and the assessment screening. I live in one of those school districts. My dh and I are so blessed to be living here and our kids attending the school that they do.
I wish all school districts can really be in tune with assessing and diagnosing autism.
Best wishes to all of you.

Roseprincess :flower1: :D
 
I think I know Rose and her kids :)
We live in the same district and I have to echo everything she said about our program.

My ds was dx'd by the school at age 4. He went through the preschool program and is now in a mainstream 1st grade class (with a classroom aide).
For now my son's dx is high functioning autism, however I wonder if it wont change to asperger's as he gets older. He isn't a severe case, so honestly I havent pursued it medically. I didnt want to put him through a bunch of exams that would only tell me whether or not the school is right.
If he needed services beyond what the district offers, I would be all over it. But the district has been wonderful with helping him and ME. I think I am a better parent because of all the tips I have picked up through his therapy and through the district's parent support groups.
 
PDD is on the Autism Disorder spectrum. Since Autism is a spectrum disorder - it looks differently in all people. Looks like you are in California - you should be able to use your local regional center as a resource.

Does the district want his diagonsis to say Autism instead of PDD before they will place him in the Autism classroom? What is his disability listed as now? My son has Asperger's Syndrome and his disability is listed as Autism since Asperger's is on the spectrum as well.

We received our diagnosis through a developmental ped but it's important to find someone familiar with Autsim - sounds like you have found someone. Good luck with your appointment!
 
My son is only getting speech therapy in his special day class. The school psychologist won't re-test him for autism unless someone else (doctor, psychologist, etc) from my insurance will back it up with their diagnosis. If my son gets a diagnosis of autism, then he will be eligible for more services. I looked into regional center, but they won't help unless he's diagnosed with autism, not just PDD. I just want to make sure that my son gets the best treatment possible. Everyone agrees my son is on the spectrum, but no one can agree on where on the spectrum he is on. Thank you to everyone on your advice and encouragement. I'll provide another update after our appointment in January.
 
I have a 8y/o son dx with PDD-NOS. A great resource I have found is FEAT (families for early autism treatment).
www.feat.org
I believe there is a local chapter in the LA area. They should be able to recommend doctors/clinics in your area who are experienced with autism. There you can also find what your legal rights are in regard to your school district (IDEA act) and the services your son should be receiving and provide you with an advocate if necessary. I hope this information helps.
Angie
 
I have been reading your post and don't know much about Autism however I would suggest to you that since both the school and your health provider can't /won't give you the answers/ DX that you need to insure your sons successful future I would say you need to call your state Odbudsman. I think I spelled it wrong but they have the power to fight/advocate and fine any instution that recieves public funded money and insure that they are doing their jobs. They are the ones who survey and maintain all nursing home care faclities in states. They could at least point you in the right direction. Belive me my daughter is so high fuctioning that until she refused to read (because she couldn't she has MRDD with spefic learning disablities) they wouldn't test her. Keep at it and good luck.
 
Isn't it so unfair that we have to fight tooth and nail for our disabled children?! The only thing that gets me through it is my son's happy face and the fact that it's all in God's plan.
Thanks, everyone!
 
Hi all! We are in the same boat! We have a 6 year old son who is deaf and is on the PDD spectrum somewhere but no one can diagnose him since no one knows what is because of possible autism and what is due to the hearing loss. The state has him down as autistic and so does the school district, but his speech pathologist (who is amazing and has taught him to communicate with PECS picture exchange and has an autistic older sister that is high functioning) and his OT both say they don't think he is autistic. We think he is mildly autistic. He has symptoms like chewing on things, rolls himself back and forth to sleep with a blanket over his head, some hand flapping when he is excited and he like to arrange and rearrange his Little People until they are just right. He also only will eat certain foods, and he does not like to give hugs (he will give kisses to get what he wants (he is SUCH a manipulator!) But he also is very social with us and peers, has excellent eye contact among other normal social behaviors. At this point we don't know what to do or think. He has been to countless doctors and we still have no diagnoses. So big hugs to you and your family- I know just how frustrating it is.
 
The teacher that would say that a child with PDD or PDDNOS should be in a classroom of other children with the same disorder, doesn't know what she is talking about.

My daughter was diagnosed when shew as 6, in 1st grade. We had always known she was different, and she didnt' begin speaking until she was 3. When she did begin speaking, she skipped the 'baby babble' and was speaking in complete sentences. She had always been extrememly clever in learning how to make things work, or putting things together. She was operating the vcr by herself before she was 2.

She was diagnosed as being PDD NOS (pervasive developemental disorder non othewise specified), which means she falls under the 'autism' spectrum, but is high functioning. She had classic signs, that I didn't realize until she was diagnosed, and I did research. While she was always content to play alone, she also sought out the company of other kids, she was an incredible mimic even at an early age. She never was as affectionate as her older sister,, but from watching her sister, she learned to greet me with a hug, when I would come home. She will now even snuggle with me to watch tv, which hacks off her older sister,,lol.

They do not reccommend seperating children who fall under the autism spectrum,mainly because part of that they are needing is to learn how to 'act' like a kid. They can learn to 'mimic' what is considered 'normal social behaviour' by interacting with other kids. They basically need to be programmed, and the only way that they can learn social interaction, is to be in situations where they can, well, socially interact. If you were to take these kids out, and seperate them, they would only learn from each other, which is not what the psychologists advise. It would be like transfering data from a computer that has no data on it,, or the wrong data, to another computer.

My daughter is 14 now, and we have been very lucky to have had the support thru her school years, of her elementary school staff, intermediate school, and middle school. She has always been mainstreamed, yet modified on her classwork. This modification is to make sure she gets any extra help she may need, altho she is a very independent thing, and ususally doesn't want any help. She has high marks every report card time, and has left speech therapy as of this year. Not of her choice tho, she liked getting to take speech, because she liked the teacher,lol. She had many learning disabilities in her early elementary years, and was unable to read at all until she was in the 5th grade. By the time she was in the 6th grade, her reading level exceeding that of the rest of her 'normal' classmates. Something clicked for her, and she has not slowed down since. She is a very talented writer now, and artist, impressing her art teacher with witty and well drawn comic strips that she does for fun.

She also went from being fairly isolated in her early school years, as most kids her age, had trouble understanding her, so would avoid her. She never let that get to her, and nowadays, she has quite a few friends, who think she is really cool,,lol.


Carriebear, when Danielle was younger, she was obssessed with polly pockets, and used to line all the little 'kits' up like they were a train, and each microscopic piece that each came with, was always with it. She would absolutely freak out if she lost a piece of one of the kits. I can't tell you how many barbie dolls had to be replaced, due to a lost shoe. If it was not perfect, she would get quite distressed. This was until she was 11 or 12, and out of the blue, one day packed tham all away, and said she was now too old for them. I think someone must have said something to her somewhere, that playing with such toys was for much younger kids, because in the decision of giving them all up, she was deciding to be an 'older' kid. It was as if she was doing what she thought she was supposed to do. I only recently gave all those polly pockets kits away,, with her full approval, I waited until I knew for sure that she had actually outgrown any desire for them tho.


Don't let educational professionals who have no experience with kids with PDD try to make you feel there is no hope for your child. It is just ignorance on their part. You are your child's best advocate, but there are actual professional child advocates, who can go with you to meetings at the schools, if you find that it is too emotionally draining. I know I did in the beginning. Remember the school can't do anything, without your permission.

Don't be discouraged, I know that I wouldn't want my daughter to be any other way, than the way she is. It's what makes her unique, witty, intellegent, and see the world in a different way, which helps me see it differently as well.
 
Thanks, Teris. Your child sounds just like my son. Sometimes I think I should just leave the diagnosis as PDD and just keep him in the class he's in. But he seems to not be picking up the material (colors, for example). I don't want him to fall too far behind. I'll have to talk to his teachers again when school opens up on Monday.
 
I know that if Danie had not gotten the extra help in the early days, she would not be doing as well,, the modification they did for her, enabled her to learn at her own pace, while still being around her classmates. This is in Houston Texas, so I don't know how schools away from Houston handle children with PDD. I do remember her speech teacher telling me once, that more kids are diagnosed than ever before, and I used to wonder if the 'vague' diagnoses were to get more financial aid for some of the schools. I think that is one reason they don't want the responsibility to diagnose the children themselves. However, in Houston, the school will help finance having testing done by independent psychologists. I forgot how much we went thru in her early days at school. I am very grateful for the help we have had with the schools there. It makes all the difference in the world.

I live in the UK now, and have remarried, but am in Houston for a month or so at a time, at least 4 times a year, so am able to keep in close contact with all her teachers. One thing they have tried to avoid, is putting a label on her, that would cause her discomfort when she gets into High School, which is next year. I worry about High School, the same that I worried about when she moved to intermediate school, and middle school. She panics a little at change, and takes a while for her to feel comfortable. She is definately a creature who likes to have a schedule, and to know what to expect.

I don't know where in the spectrum your son falls into, but your post caught my eye, because it reminded me of when Danie was diagnosed. She had a kindergarten teacher who was a nightmare. She had no empathy with any of her students, let alone one who was obviously different. It was very apparent to us early on, that she really wasn't keen on having Danie in her class. I can't tell you how gratifying it was when the psychologists insisted that the best place for Danie, and most autistic children on the mild end of the spectrum to remain in mainstream situations. Danie didn't fit into the mold her kindergarten teacher wanted her to fit into, and it was a very very difficult year for us.

I would be curious to know how things go for you when school resumes.

Best of luck, :)
 

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