New here w/ quest: Low Func. Aut/PDD
Find a Conversation
| Thu, 01-12-2006 - 8:51pm |
Hi Everybody,
After years of going from specialist to specialist trying to find a "diagnosis" for my 9 year old daughter, we think we finally may have found one. A new neurologist said she has "PDD". We always thought that she was mildly mentally retarded but he explained that she could have Low Funtioning Autism. She definitely has many of the characteristics of Autism but never enough to say "Autistic".
Does anyone have a child with Low functioning Autism? Rachel has a 70 IQ and a Vineland of 66. She is delayed in every single area of development. All genetic testing came back negative for any syndrome.
In one way, I am relieved to finally have a diagnosis but on the other hand, I don't know what to do in terms of her education, etc... She is currently getting a ton of related services but due to IDEA is in a regular class with 27 other kids and a 1:1 aide.
Please share with me any words of wisdom or advice you may have.
I am completely lost!
TIA,
Robin

Hi there,
Actually, My DH and I were having a discussion the other day of the terms "low functioning" and "high functioning" autism. He quotes an adult with autism he heard speak (I think it was Jerry Newport). Functioning sounds like a washing machine. lol. Autism is autism, so welcome here.
Even so, not sure I would consider 70 IQ as LF autistic per se. Some people say that a 70IQ is the cut off. Some will say it is whether or not a person is verbal. Others will say it has to do with living skills or being able to function in society. My nephew was tested a while back with about a 70IQ. But considering how verbal he is and other skills as well as he ability to relate I consider him high functioning. My DH (an autism specialist) considers him about mid functioning. Actually, DH considers him to be a "strike zone" autistic. That stereotype of an autistic we all think of or read of.
We have a wide variety of needs on the board and levels of autistic traits and challenges. Mostly I would say they are verbal with average to above on this board but not totally. But again, regardless, autism is autism. There are definitely some areas where we will share experiences, concerns and ideas.
I have 2 HFA/AS kids (both have had both diagnosis). My dd was delayed but has for the most part caught up. I have no idea what her vineland would be now but her IQ is about the average range with lots of scatter. She still requires alot of reminders and assistance with self-help skills. (Getting better all the time). She is mainstreamed for academics and in a special class 2 periods a day to help her. She tends to be a bout a B-C student but that is because she has some skills which are great and will get an A and then gets a fair number of F's in areas she struggles.
My other is my son. He was originally tested high IQ but struggles with more autistic traits than his sister. He is 9 (nearly 10) and in a special day class due to behavior, anxiety, sensory needs and autistic stuff. His academics are mostly to grade level still but there are some glitches that are really starting to catch up with him. Particularly in comprehension and writing.
Advice we have lots of. Mostly just love your kiddo. And know where to purchase good wine cheap. LOL. Oh and have a therapist on hand or a load of good friends. And learn to laugh, alot.
Renee
Hello, my 10 son has PDD. His IQ is also 70 and he is delayed in many aspects. He was in a regular Ed classroom with a 1:1 aide for many yrs but he became embarrassed about being the only kid with an aide. Although I am currently at odds with his school over their lack of experience and sensitivity in regards to children with PDD, you may want to look into an inclusion class if your district offers it. My son is in one this yr and was last yr.
The idea of inclusion is to not segregate the special needs students from the "typical" students. Typically the class is a little smaller in size and has a regular Ed teacher and a special Ed teacher running the class. My son is pulled out for OT and speech but since the class tailors the work for the special needs kids, my son doesn't feel like he is the only one that needs help. There is also a classroom tutor and my son has a shared aide. Idealistically, I feel this is the best model for my son, but I am having major issues with the teacher/school. Last year this model was wonderful due to the teachers in charge of the class!
I hope this helps! Let me know if you have anymore questions! PDD can be very frustrating for all! Good Luck!
Hello and welcome!
My son Peter is 7½ and has HFA or PDD or AS depending on who you talk to, or what mood he is in!
He tested borderline MR (71 I think) at entrance to K, and is due a re-test this year. I am curious to what the re-test returns.
My son is and has always been in self-contained Special Ed. He is in 2nd grade, in a class of 6½, 1 teacher, and 2 aides. A group of the kids are mainstreamed together with a regular class for Math and Spanish, and there is talk of mainstreaming for science. His class is regularly 'twinned' with that other class for PE, Art, Music lunch, recess etc, so he gets to hang out with the regular kids quite a lot, and considers that class 'his class' too. He is doing great at school. He is still below grade level in about all areas (the kid didn't gain functional language until he was 4¼), but gaining ground.
My daughter, Siobhan "at risk for Aspergers Syndrome" and with many traits, is 5½ and mainstreamed in a K class of 24 with an aide. Her IQ *tests* low average (see my comment below), and she can function in a larger class setting (my son can't), so that is working well for her.
While I don't know your son's specific needs, but I am astonished that he is mainstreamed in such a large class. I would imagine he needs more support than that. Have the district ever offered you alternative placements? What were they? IDEA is and should always be about what the *child* needs, BTW, not what the district is prepared to offer.
Lastly a personal comment: IQ-SchmIQ! I knew my son was smart from the day he was born. You could see it in his eyes. As time went on, he got lots of help and support; gained skills such as language (that was the biggie) and a new kid gradually emerged. I began to be proven right. I am about to start a college fund for him. I didn't do it earlier, because "they" said he wouldn't be able to hack it. I disagree.
My best and oft-repeated advice on this board is go with your gut, and always be prepared to speak up and push for what your gut tells you.
I hope you stick around and we can get to know you and your boy better.
-Paula
visit my blog at www.onesickmother.com
Thanks everyone for your replies. Rachel has always been a "gray" area kid, never quite fitting into any one category. While she has some Autistic like features (i.e major sensory issues when she was young, poor relatedness, fleeting eye contact) she never had many of the other symptons. I remember meeting with two separate psychologists when she was about 2 or 3 and telling them I thought she was Autistic. Both said "no". They each took out the DSM IV and we went over the criteria. Rachel did not meet the criteria needed for a true diagnosis of Autism. At the same time, there was no denying that she was not "typical". She walked late, talked late, potty trained late etc.. Her self-help skills are very delayed (i.e still needs some assistance to brush her teeth, get dressed). She also looks different. There is something about her facial features which are "odd". It is especially noticeable when you compare her to her younger "typical" developing 3 year old sister. While genetics testing came back negative, the geneticist felt strongly that at some level, her delays were genetically based.
Now I go to this new Ped. Neuro. and he says, she is PDD. I need a "label" (unfortunately) because it helps to gets services. Prior to this "diagnosis" I told the school district that Rachel learns best with task analysis (sort of like ABA). They agreed and even wrote that the therapists (O/T to be exact) will use task anaysis to teach Rachel things like buttoning, zippering, and that she would keep in touch with me. (This was at Rachel's Annual Review in May of 2005). Of course, since September, I have never heard from her. My question is this, with this diagnosis, and the fact that the therapist never followed what was written in the comments section of Rachel's IEP, can this be used to get Rachel some ABA (which the district adamently hates to give!!!!!!!!!!!). I hate to sound so calculated. My school district, while highly regarded and ranked very well, is extremely sneaky themselves. My DH says to wait until we get back all our privately paid for testing and then set up a meeting. He feels it's like "playing poker". Don't show your cards or play them until you need to.
Does anyone have any advice? I don't know very much about getting the district to pay for some ABA and I don't even know if they will do it for a kid who is in district based class and not a BOCES program. I also don't know if you can even do ABA with a kid who may not really be PDD but just "slow".
Oh, and as a side note, I actually have a good relationship with the district and have been able to secure some pretty extensive services, suprisingly without an attorney, which is what half the kids receiving the same services as Rachel have had to do. My feeling is that "I can get more bees with honey" and so far, it's worked but now, I just don't know.....
TIA,
Robin