Anyone with child misdiagnosed Autistic/ADD

[Disneyholics5]

Has anyone has the problem of having their child misdiagnosed as Autistic and/or ADD? My nephew took a standardized test by the Board of Ed here in New York City and the advised his mother that he was possibly Autistic and hyperactive and required special ed for speech therapy, occupational therapy, and he was 3 1/2 years old at the time. He is now is a special ed schoo with Autistic children and the first day came home saying he did not like it and the kids were different from his old school. Myself and my son and my nephews grandmother all agree that he is not autistic - hyperactive at times yes. I have checked the internet for symtoms of autism and the only one that I find he would fall into is having a problem in school - he does not like to sit in circle and have stories read to him (because he can't ask questions like he does at home) so he gets up and climbs or plays around. He is also very independent at times and does not take to being given orders (gets the stubborness from his Mom). The school has suggested that he stay in special ed until at least the 2nd grade for speech therapy, (he speaks find but has difficulty with some s, l, or m words at times) and insist that she have him formally tested by a neurologist. Please, I have absolutely nothing against autistic and/or add children receiving the special education that they need, I think it is wonderful. But I am very concerned that he will wind up in special ed classes that he really does not need. Since he has been in the special ed school from Sept. 05 his behavior has become difficult at times and he still insists he want to go to the real school. I know I have no rights as the Aunt, nor my son as his cousin, nor his Grandmother but I was wondering if anyone had any suggestions how we could get this across to his mother who is basically oblivious to everything going on. Thanks for any assistance. Sorry this was so long.

 

[missypie]

If it is a public school, they are legally required to mainstream him (have him in non-special ed classes) as much as possible. The parents can insist on this. The parents need to take him to a child study center and have private testing done to get a correct diagnosis, then they need to call an IEP/ARD meeting and come up with a new plan of action.

 

[Galahad]

Was it a Pediatrician that diagnosed this?

When DS #2 was very young he had recurring ear infections - eventually tubes in his ears. His hearing was therefore compromised at the time and his speech development was late. We had a speech therapist tell us he was "severely disable" and needed several thousand $$'s worth of therapy a year or he was sure to end up with huge developmental problems. We ignored them. Many years later, he skipped the 7th grade, is now a Sophomore in H.S. in multiple A.P. classes, and is an accomplished musician and is an excellent public speaker. Get another opinion and make sure it's a physician, IMO.

 

[Aneille]

I don't know a thing about autism or special ed but I do know that even if I suspected my child had any need for special ed classes he/she would be getting multiple opinions.

I would never just go by one standardized test for the assessment.

I would probably try to persuade the family to get another evaluation done outside of the school.

 

[In a hurry]

My sister kept my nephew out of the public school system, due to speech issues. The % of kids with speech difficulties automatically put in LD or Special Ed is intolerable. Galahad is entirely correct, IMO, work with a good physician.

 

[Disneyholics5]

Missypie: I hope the laws are the same here in New York as they are in Texas. I know the school is giving her the run around and here in NY they get a lot of money for each kid in a special ed school or that they refer for special ed in the public schools, which is why I am so concerned. He was in nursery school at 3 1/2 when they told her because he would not sit still in circle he could not come back unless she had him tested. That's when she called different schools in the area and made an appointment at the school he is in now which of course found SOMETHING. I mean they said he needed occupational therapy because they put him on skates (for the first time I might add) and he fell - so therefore they said he has problems with coordination. Meanwhile he has been running up and down the stairs and halls from his apartment to our apartment since he was 2 years old. My niece is the type who thinks ALL doctors, teachers etc. know best AT ALL TIMES. I am having such difficulty trying to at least agree to have him geat another opionion if the neurologits comes up with anything.

Galahad: actually the one time his doctor mentioned it was yesterday when she took him to the doctor because he got a piece of candy stuck in his ear (yes I know it is usually the nose) and he was insisting to take off his shoes so that they could weigh him and wanted the blood pressue kit for his pressure test since he knows they do this all the time and he LOVES it. Naturally they wanted to get right to the ear problem and it was a new young doctor not his regular doctor who said he must have ADD because he does not want to listen when they were saying no weight or blood pressure, and he went and told his regular doctor who then gave her a referral to a neurologist. I will agree he is hyperactive AT TIMES, but from what I have been reading, they don't actually test/confirm ADD until the child is at least 6 years old. I can only pray she goes to a reputable neurologist.

Oh, and you both might be interested to know that I spoke to a speach therapist here in New York who works in the New York public schools who has advised me that here in NY anyway not sure about the rest of the country, that speech therapy, or even occupational or physical therapy is NOT CONSIDERED special ed, and that he can go to a mainstream public school and receive any or all of that therapy without being labled anyway as disabled and needing special ed. Unfortunately my niece does not agree with that. UGH

Aneille and In A Hurry: I can't agree more with all of you but my niece is very very stubborn and insists if professionals tell her something it HAS TO BE TRUE. Her stepmother has a master's degree in child therapy and psyhcology(sorry for the spelling) and works in Columbia Presbyterian here in NY in the children's department and she REFUSES to even talk to her about the situation. It is almost as if she does not want to be proven wrong for some reason. She is separated from the child's father and he has been of no help whatsoever.

 

[barkley]

as far as i know there is no standardized test for add/adhd. when my son was diagnosed (at age 3) it was only after his pediatrician ruled any medical factors out (allergy testing, hearing testing...) and he was evaluated by a child psychiatrist. and the evaluation involved observational questioneers that had to be filled out by his preschool teachers, daycare providers and us. the child psychiatrist also had to do some observation of my son (had him do some tasks, observed in structured and unstructured play...).

i'm assuming that his mom requested the testing (because at 3 1/2 when diagnosed he would'nt have been in public school such that they would have referred-unless maybe he was in some form of public funded preschool?).

i would encourage her to insist on a re-evaluation, and if possible pursue having a private evaluation done outside the school system.

and yes-mistakes can happen. i went to school with a boy who was in special ed for k-10th grade (he was diagnosed with severe developmental delays)-until in 10th grade someone did a hearing test on him and found he was severly hard of hearing but tested out with a completly normal i.q.. unfortunatly years of being in special ed classes had taken a severe toll on his personal sense of what he was capable of achieving.

 

[Dina]

I was also going to say-- I don't know of any standardized test, and if it was just one test, I'd definitely be fighting it.

My 5 and a half year old son was just recently diagnosed with aspergers-- high functioning autism, but that took the Intermediate Unit almost 3 years to diagnose. He's been in Occupational/Physical Therapy for years for developmental delay-- they thought sensory Integration (also in the autism spectrum), but now saying Aspergers. I don't doubt you, but I can't believe they could diagnose autism with one test. Again it took three years of my son being evaluated by his our physician, his teachers, physical therapist, Occupational Therapist, Speech Therapist, Special Ed Teacher, psychologist-- and I also participated in evaluations. I would really really fight that diagnosis.

 

[Disneyholics5]

I thought as you have said that there was no standardized testing. He was in Catholic School nursery school, he started 1/2 way through the year so naturally the other kids were already used to the nursery school routine. They are the ones who suggested she have him tested. Also a concern of mine is that my nephew is much more clamer and well behaved when he is with myself and my son, which is every day after work, sleeps over on the weekend and we take him out for one entire day on the weekend, to the movies, playground etc. no problems at all. we also take him to Disneyworld every year and have never had a problem with him on the rides, watching the shows or waiting in line, other than the regular antsy pantsy if the wait if too long but nothing out of the ordinary, and he participated in the baking cookies at Epcot, following instructions and being with the other kids, no problem at all. I have a video of his nursery school graduation where two other boys where hitting each other and pushing each other, and a girl got up out of her seat and started walking behind the chairs moving them around. my nephew towards the end got up and started to hide behind the curtin. now does that mean all these 3 and 3 1/2 year old kids need special ed. I think a big problem today is that a lot of teachers just don't want to take the time to deal with kids that are more active than others. Thanks for your advice.

 

[tw1nsmom]

Oh, and you both might be interested to know that I spoke to a speach therapist here in New York who works in the New York public schools who has advised me that here in NY anyway not sure about the rest of the country, that speech therapy, or even occupational or physical therapy is NOT CONSIDERED special ed, and that he can go to a mainstream public school and receive any or all of that therapy without being labled anyway as disabled and needing special ed. Unfortunately my niece does not agree with that. UGH.

Well, the speech therapist is partially right. He can receive any or all of his therapy in a mainstream public school. It's caled LRE (least restrictive environment). He can also receive services for autism/ADD in a mainstream school. However, speech, ot, and pt are considered special education services. A child would need to be evaluated and show a deficit/need in one or more of those areas in order to receive services/qualify for an IEP. DD has an IEP and is considered Other Health Impaired (OHI) due to a slight fine and gross motor skills delay. She's received OT and PT since she was three. She's currently being declassified since she's caught up developmentally and will not receive services next year.

There are times that some schools provide those types of services on a limited basis to children who don't qualify for services under special education, but are considered at risk. This is done on a temperary basis and if the child doesn't quickly catch up they will need to be classified in order to continue services.

DS also has an IEP. He has been diagnosed with Nonverbal Learning Disability. He's in the same "regular" kindergarten class with his twin sister and receives services via an aid, resource room, ot, pt, and speech.

I'm not sure that a neurologist is the best choice to evaluate this child. Personally, I would seek out the services of both a developmental pediatrician and a pediatric neuropsychologist for a full evaluation.

You may want to include Nonverbal Learning Disability, Aspergers, PDD-NOS (pervasive developmental disorder-not otherwise specified) in your research. The spectrum of behaviors that are classified is extremely broad. There are family members who think I'm crazy to think that DS has a disability. It's a very complex topic, that requires a great deal of research to educate oneself. I would give your niece as much information as possible, but ultimately she needs your support.

 

[SandiH]

Schools can not diagnosis Autism or ADD. They can give an "educational" diagnosis for programing purposes but anyone who suspects Autism needs to see a physician (developmental ped, psych, or clinic) that deals with special needs children. There are a lot of characteristics of Autism that are similar to other special needs and ADD/ADHD are one of them. If the child realizes he's that much different, chances are he's not Autistic or at the very minimum high functioning. If the child is high functioning, he should be in a more general setting geared to help him socially. I would definately seek a second opinion.

 

[minkydog]

I would get a second opinion. It's one thing when a trusted physician tells you, after exhaustive testing and observation, that your child has ADD or autism. It's inappropriate for the doctor to make that diagnosis while trying to get a bean out of a kid's ear

My DD12 was tested in 5th grade 6wks after she entered public school(she had been homeschooled up to that point.) Her scores were low in several areas and the tests revealed an anxiety disorder and at-risk for depression. They suggested having her repeat 5th grade. I was outraged! They did not take into account that the child had made a cultural shift from homeschool to large public school. They disregarded the fact that her dad was recovering from a life-threatening illness, was on oxygen, and permanently disabiled immediately prior to her entering school(that was teh reason we stopped homeschooling.) They disregarded the information we gave them about her older brother who also tried to commit suicide during this time. All they focused on was the fact that she seemed "shy" and "sad" (duh!) and wasn't sure of her math facts. She also didn't test well, probably because we did a lot of total recall tests at home rather than multiple choice. I refused to sign papers holding her back! the nerve

DD entered 6th grade at the middle school where she went on to make honor roll her first semester. She plays in the band, sings in a choir, collects friends like bangles, and loves her teachers. She she is on grade level in everything. Of course, her dad and her brother were finally stable. too.

How devastated My daughter would have been if I had listened to those people! I have a low opinion of school-based testing

 

[Alexsma]

Go to the US Dept. of Educations web site

http://www.ed.gov/parents/needs/speced/edpicks.jhtml?src=ln

This link has all sorts of information on your rights, and more importantly your child's. Be sure to realize when requesting any meeting to do so in writing, sent by registared mail. With a signature required as proof that it was received.

 

[jackskellingtonsgirl]

Hmm. Well, here is what I know about Texas. Not sure if any of it is true in New York.

Here, when a child turns 3 the public schools are responsible for providing services such as speech therapy. I can't remember if the pediatrician refers the child for testing and then the school picks up providing the service after diagnosis or exactly how it goes. My friend is a speech therapist in a public school and some of the kids she works with are kids who are too young for school yet live in the zone for the school. She tests them for speech issues, then sees them at the school on a regular basis if they qualify.

The public schools are also required to provide testing if a learning difference is suspected, such as dyslexia. I was ORIGINALLY told the school district could NOT provide ADD testing, that we would have to have it done privately. I went round and round last Spring trying to work out if it was covered by insurance, and if it was covered, which doctor could we go to. I finally gave up because the school year ended.

NOW I find out that there IS a way to have DS9 tested through the district. They don't think he has a learning issue, they think he has inattentive ADD. There is a "Family Services" center for the district that provides testing by a psychologist. For multiple reasons we decided not to go that route and DS is at the pediatrician right now with DH meeting with the diagnostician.

DH and I met with her Monday and answered some preliminary questions, I brought copies of everything his teachers had filled out, and she explained the tests he would be taking today. She also had us do a profile for Asperger's, which I told her he DOES NOT have. The only criteria he met for Asperger's are the ones that are also indicators of ADD.

It is very difficult to sort out all of the issues. DS had some tactile defensiveness as a preschooler, but he has outgrown that for the most part. He doesn't have sensory integration disorder. He doesn't have Asperger's, although he does tend to become hyper-focused on certain topics. I really think he probably is ADD although he is not hyperactive.

Disneyholics5 -
There are so many things that MIGHT be the problem that it is very difficult to pick through to the REAL issue. For a child diagnosed with something as a preschooler I would ABSOLUTELY be repeating those tests as well as testing for other things. If the only problems are ADHD and some articulation speech issues there is NO reason for him to be in a special school! In fact, maybe he doesn't have ADHD after all. I don't know many preschool aged boys who are good at sitting still. Maybe it was just not a suitable environment for him. I also think the chances of misdiagnosing a child are extremely high when the child is so young. I have heard that doctors don't like to diagnose ADHD before the age of 7. It also seems to me that if the doctor who diagnosed him isn't very familiar with the other things that MIGHT be causing his behavior then he might have received a "one size fits all" label.

 

[Karel]

. However, speech, ot, and pt are considered special education services. A child would need to be evaluated and show a deficit/need in one or more of those areas in order to receive services/qualify for an IEP. .

You can qualify for speech services without an IEP. (At least here in NJ) Articulation problems can be worked on by a speech therapist without a full CST workup. My son and daughter did this.

It's tricky, though when you get into the area of language and needing a speech therapist.

I don't know what the exact line is but a few years after my daughter 'graduated' speech, we had a full CST work up and now receives language services from her speech therapist (with a full IEP).

 

[Karel]

Has anyone has the problem of having their child misdiagnosed as Autistic and/or ADD? My nephew took a standardized test by the Board of Ed here in New York City and the advised his mother that he was possibly Autistic and hyperactive and required special ed for speech therapy, occupational therapy, and he was 3 1/2 years old at the time. He is now is a special ed schoo with Autistic children and the first day came home saying he did not like it and the kids were different from his old school. But I am very concerned that he will wind up in special ed classes that he really does not need. Since he has been in the special ed school from Sept. 05 his behavior has become difficult at times and he still insists he want to go to the real school. I know I have no rights as the Aunt, nor my son as his cousin, nor his Grandmother but I was wondering if anyone had any suggestions how we could get this across to his mother who is basically oblivious to everything going on. Thanks for any assistance. Sorry this was so long.

It seems like there are a lot of things here that don't add up. Wouldn't the autistic school say something if he was not appropriate it there? Is he in a mixed class of special needs and there happens to be autistic kids there? How is he doing in this school? Are there conferences? Can the mother go in and observe? Was he tested by the Child Study Team - which was mistaken as a standardized test??

Does he play with other kids his age? How does he compare with these kids? Sometimes what we think is normal doesn't look as normal when we see other kids.

The mother should be encourage to ask questions and make sure that it is an appropriate placement.

 

[Alexsma]

Children at that age should have been given a MFE(multi factored evaluation) at which they would sit down with you and reveiw the results. The child should be placed in the Least Resrictive Enviroment (LRE). By law a public school needs to supply these things, until the MFE has taken place there can't be meeting to write an IEP (individual education plan). Please talk with your schools administration, something isn't sounding right here.

 

[Disneyholics5]

for your suggestions and opinions. My nephew loves other kids and loves playing with other kids. As a very active little boy he sometimes gets loud but has clamed that down quite a bit. He was always very happy, sometimes overly excited to be out and around other kids (he was not taken out often for numerous reasons too lengthy to go into) so he would get really happy and exited when he was around other children. From what I understand from his mother the school's biggest problem/concern is that he does not OBEY them on command. That at times they have to repeat to him to sit down or stop running etc. and he won't sit still when they read stories. He will do arts and crafts and computer, exercises and naturally love the singing and gym class. I am not even certain that my niece realizes that he is in a school for autistic children, she seems to think it is an early intervention school. When she took him to this school that she picked out of a phone book he was seen by a speech therapist, occupational therapist, physical therapist, and some sort of psycologist then was called in for a meeting regarding the results. At that time she was told he needed speech therapy because he has difficulty pronouncing certain words with s, m, or l, things like that. OK no big deal. He was told he needed occupational therapy because he was uncoordinated because he fell down when he was put on skates for the first time, (they also put him on a tramboline which he had no trouble with, had him run up and down stairs where he exhausted the occupational therapist, run in a circle etc. all with no problems). They said he should be able at 4 to eat with a fork and spoon (which he was and is able to do) but that he should also be able to cut his food himself and dress himself. My niece never to that point wanted him to use a knife and told them she would not allow them to have him use a knife, plastic or otherwise, and that he was learning already to dress and undress himself properly. Now he can do it fine (other than to tie his shoes). Also, every nite he comes down to myself and my son and we teach him as much as we can to write his name, his ABC's, counting etc. and play with him and take him out on the weekends. He is FINE with us wherever we take him. Oh and yes they also said he runs up and down in the apartment because he is trying to connection with his surroundings-they did not take into account that he was never taken out in the street until we took him out on the weekends. So what was he do to do to entertain himself? Also, they did not take into account that his mother and father separated (and since that time he will no longer eat chicken, rice and beans which his Dad cooked and he enjoyed). This is really my big problem with these schools, doctors and tests, they do not take all things into consideration. In my opinion my niece is the biggest problem here in that she will believe and listen to anything they tell her and no-one, not myself, my son, her mother, her step-mother (the one who has her masters and is certified in child phsycology) can get through to her. Believe me, if my nephew needed special ed I would be the first to say so, but when he comes home from school the first day saying he did not like the school, the kids are different and wanted the real school, and asks my son and myself everynight to take him back to the real school, something is terribly wrong. Unfortunately I think it is my niece that has the probelm and won't admit it. Sorry this is so long. Thank you all again very much. I just keep praying to God every night that she will see the error of her ways.