Wrong Diagnosis, Is That Possible? for a 3 Yo Toddler -Autism Spectrum PDD NOS?

Updated on October 17, 2011
D.J. asks from New York, NY
20 answers

Okay, moms, here it goes, my daughter was diagnosed to have an autistic spectrum pdd nos in the high functioning end, honestly, no one can detect this, not even us. We took her for an eval because of some speech delay, she talks a lot but not talking like expected, for example she says a "set of words" i.e. "I want peanut butter cups", etc. instead of changing it around and say, "give me a peanut butter cup"...it's basically like this, she uses a set of words to effectively communicate what she needs and she has no trouble getting it across what she wants. Instead of saying "yes" or "no" to questions, she'll say what she wants but won't say yes or no. She also has some repetitive habits like talking about dolls and and their nails, she'll bring it up out of the blue and bring us a doll, one of hers and say, "nails, mommy, nails", it's one of her favorite topic. And lately she loves to talk about brooms and fascinated whenever she sees one when we shop at Target etc. She also loves to talk about bathtubs, I guess she loves bathing so much, she is fascinated when she sees one in other people's house, on tv, etc.
We had her evaluated because we wanted to see what a professional thought and she walked away with this Austism spectrum pdd nos but as the Dr. said really high functioning kid hard to detect she even has it. He even said she can lose this diagnosis in time? I never heard of such a thing, either one has it or not is what I thought, but you don't lose this because it's organic.

My question is this, has anyone had the same experience ((your child getting this diagnosis) and found out later that the diagnosis is wrong? I guess it's possible we may be on denial and I am sure I'll get lots of response here pointing that out, but my daughter is affectionate, loves socializing with close friends and families, makes eye contact, loves looking into your eyes and saying I love you to me and his dad, really loving and helpful child (helps me clean up all the time!) asks about her cousins all the time who lives long distance and she has a great memory, pretty easy going, she has so many strengths and the dr. even said "she does not present at all like a child with AS" but he diagnosed her with this because of her set of language she use instead of free flowing language and also her fascination with certain things. My daughter will be three next week.

Thanks for sharing your experience.


I wanted to add that ever since the diagnosis, my daughter has been doing speech therapy, she did not qualify for OT and not for developmental therapy (she plays imaginatively, appropriate for her age).

Also, to add that my daughter hardly talks without looking at you in the eye, she makes appropriate eye contact and even gets your attention (to look at her) when you talk to her without making eye contact with her, lol.

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answers from New York on

Well, the NOS part of the diagnosis means she doesn't fully meet the clinical criteria for a more specific disorder. It is possible she only has 2 problem areas--unusual speech pattern and being focused on specific subjects. I think it is very possible that with good services she may be able to function pretty normally in a lot of situations.

I don't have a child on the autistic spectrum. But I did family counseling with a boy with the same diagnosis. He was about 4.5 when I met him. He had the PPD NOS diagnosis at age 3 and had various early intervention services and was in the special education preschool class then transitioned into a regular Kindergarten class with some extra services. I think most people would not know that this child had any diagnosis if they met him in a casual setting (a teacher or someone who knew him well might). The parents had an 18 year old with more pronounced autism who was also doing well. She was a bit shy but once she had met me a few times was she was friendly and would talk to me. She lived at home and worked at a retail job. I think the parents had a lot of experience that helped them manage with the younger child. The parents were very used to the school system and special education services and could advocate when needed. Also the mom was very good at emotionally preparing the child for new experiences and explained things to him in advance. This helps with most kids but especially ones that like routines and get upset when the routines are broken (which is pretty common for children with autistic spectrum disorders).

You might get something from the book Quirky Kids. It is written for parents of kids who are atypical in some way, whether or not they have a specific mental health diagnosis.

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answers from Kansas City on

I think it is appauling how many Dr.'s diagnose children with some sort of form of autism now days. The child is three and she sounds pretty darn normal to me. I also don't get why so many parents have their children evaluated at such young ages. She's only three. All three year olds don't do something right, whether it be, talking, interacting, etc. I wish parents would back off, going to the Dr. It's almost as if Dr.'s have to evaluate children this way, just to satisfy the worry wart parents. Not saying this is you, but there are so many parents like this.

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answers from Columbus on

First, your last paragraph is repeated hundreds of times on Mamapedia by parents with a newly diagnosed child. AS is not the kind of diagnosis you can rule out because a child can look you in the eye, is attached to thier parents, is loving, helpful, etc, etc. The diagnositc criteria does not work that way, and most kids on the autistic spectrum love thier parents, hug, have eye contact (sometimes, at least) and are affectionate. If you have met one child with AS, you have met one child with AS.

The langauge issue is a very specific one, and it is pretty definative. You can get great therapy, and she can learn how to use langague in a non autistic way, and she may not "test" on the spectrum any more, but she will have always had the diagnosis, unless you have someone do another evaluation and decide that your evaluator is full of it. It is more likely that your evaluator sensed that you needed the diagnosis softened and qualified it for you, which is an incredibly common practice. It happened to me too. Is it possible that it will just be wrong? Sure, but I don't think it is very probable.

AS is not as bad as you may think. Very high functioning children can do really well. Get her all the therapy you can. You will be glad that you have this diagnosis if she needs school services, so don't shy away from it because she needs the diagnosis to get qualified for IDEA. Once she is qualified, her "lable" means nothing, she is served according to educational need, so don't be a lable worrier either, the lable is not evil and is no threat to her future in any way, shape or form. Check with your school district when she turns three to see if she may qualify for services, many very hight functioning children will not qualify at all. Always provide private services to supplement anything you get from the school.

For now, concentrate on getting her as much therapy as you can. If she is going to no longer test on the spectrum, it will probably only happen because of very hard work. She may never out grow her facination wtih certain things, and so much is yet to come socially, you really don't know what her needs are going to be. One thing is for sure, developmental gliches are moving targets, so how she presents right now is going to change and you should be ready for that and adjust the treatment plan. Just be prepared for things to change.


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answers from Las Vegas on

Children with autism are not rocks. They are not stagnant. They do evolve -- if they are given the services that they need and are taught in a way that is meaningful to them. Because of this, there is a chance that they are diagnosed with moderate/mild autism at 3 and high-functioning at 6. This was the case with my son. He's 7 now and definitely has more skills in his pocket now than he did a year ago so I'm thinking that at some point he will fall in the PDD-NOS range. Since your daughter is 3 and has PDD-NOS right now, with appropriate services and support, she may be able to gain a lot of skills so that she may not be considered to be in the PDD-NOS range.

Some of what you have written about your daughter does bring up the ASD red flags. Her language delay, her scripting, her hyper-fixation on inanimate objects and subject matters, are all things that your doctor probably had taken into consideration in making his diagnosis. I know how upsetting this might be for you right now but I've seen a lot of kids with the PDD-NOS diagnosis make such great progress that I just want to assure you that if you do get your daughter the services that she most likely needs, you won't regret it for a minute. This is just something that you, your daughter and the rest of your family have to deal with at this moment in time. That's all. Everyone has challenges that they have to face, this is just your's. Hang tight and have faith. All will be okay.

Sending love and light to you and your daughter.

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answers from Pittsburgh on

Just to share, O. of my son's best friends was diagnosed with PDD-NOS and he has "lost" the diagnosis. He received all therapies recommended for him to the point whre they told mom, "there's no more we can offer him/do for him." Guess what he's now in 2nd grade and the school is unaware of his early diagnosis.
Take heart. Your daughter is the same little girl that she was the day before the diagnosis. Get her what she needs. She'll be just fine. Why wouldn't you embrace help? I know it's a difficult thing to get your head around, but get her any & all help available...it will help her regardless. Good luck and God bless.

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answers from New London on

you might have a normal functioning 3 year old but what if she continues this same behavior at 4, 5, 6, 7, 8 going into junior high. What if she continues to use the same kind of language? Wouldn't you rather know now how to help her and get the help you need then get the wrong diagnosis and not get any help for her? People are always looking for answers to why their kids are a certain way and you found an answer, it might not be what you are looking for but I would be grateful that someone found it and now you can help your child blossom and be the best she can be. Doesn't mean there is anything actually wrong with her now because she is just three years old but if she doesn't learn over time sentence structure and how to communicate properly with her friends and teachers it will hurt her later on in elementary school and beyond. The speech teachers and OT can help her create new communicate and language techniques. It is a blessing that she was diagnosed. Best wishes to you.

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answers from New York on

As a teacher, I agree with Jae R. Use this diagnosis, if you need to, to get extra help for her if she struggles with anything. I think the diagnosis is accurate, because you do mention some hyper-focusing on things and different speech patterns. High-functioning autism is very hard to detect and doesn't "go away" but children learn to adapt and function in society with appropriate help, so I guess the diagnosis could change. I disagree with Kelly S. Great job for you getting some extra help for her so she doesn't struggle. We know so much more about how the brain works, and how to help kids these days so they don't feel confused or lost. The earlier, the better because the brain has so many different available pathways to use, you can develop another part of the brain to substitute if one part of the brain is not working. These pathways start to become inactive around age 5, so it's harder to make changes. Based on what you've said, she may need help with social skills once she gets to school so she knows when to stop talking about nails, for instance, before other kids get bored or confused by the conversation. She'll need to know how to take turns in the conversation. I love Temple Grandin's books about her life as a high-functioning person who's autistic. She has a great perspective on life and it helped me understand how she thinks. She's a Ph.D, so don't worry that this diagnosis will hold your daughter back, I'm sure she will be fine!

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answers from San Diego on

I've only skimmed the other responses. My son was also given a diagnosis of PDD-NOS. I know it sounds scary when your child has a diagnosis like this, but, in the grand scheme of things, it's really "not that bad." Believe me, I went through the full range of emotions: denial, guilt, blah blah. It's hard to hear that your child may have something wrong with her that you can't fix. I totally get it.

That being said, I tend to see this diagnosis as a card to keep in my back pocket. If pulling it out means that my son can get additional services paid for by the school district, I will absolutely pull it out. I don't see the harm in it. Otherwise, it doesn't really have much impact on the way we live our lives.

I was also told that, with enough intervention, my son will most likely not meet the criteria for this diagnosis in a couple of years, i.e., that it will "go away." If the diagnosis no longer applies in a few years, does that mean it was "wrong"? I don't know, but I don't really care. I just care about getting him the help he needs now to be able to function reasonably well in the world later.

Good luck. Keep up with what you are doing. You and your daughter will be fine.

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answers from Honolulu on

Okay... high functioning PDD is... basically... not a big deal. They say PDD because even they cannot, POINTEDLY nor accurately say... that something is 'wrong' blatantly with your child.

She to me, is just a typical 3 year old with a delay in speech.

My friends, have kids with the same 'diagnosis' as your girl. PDD-NOS. It is just that, NOT otherwise specified. Because, they CANNOT specify... what if anything.. is 'wrong' with your child.

My friend's son is that way... and he is SUPER SUPER bright. He is just different. He is now 6. He has no problems that is different from any other "normal" kid. Even his Mom says... her son is pretty normal... BUT... all they can do is say "PDD NOS" for him. Because, even one professional said... he is FINE.... but, they knew their son is just "different'... but not in a real clinical way.
He is just... different. NOT abnormal at all... just different...and VERY VERY gifted and bright.
The only thing that he does that is "different" (and the reason they had him evaluated)... is that he is always looking around everywhere and does not dead on look at somebody. BUT... he can be looking in the opposite direction and if you ask him "What did the Teacher just say?" He can accurately say... and reiterate, what the teacher was saying. Because, he WAS paying attention. Just not looking at the Teacher. No biggie.

For your daughter... my son had Speech Therapy too. And well.... that didn't mean he is autistic PDD-NOS. He was NORMAL... just developed speech.... delayed. He was actually even assessed as being advanced... in several areas, for his age. But different in speech.

I would not worry.
Your girl is SOOOO young.
I would not assume, something is "wrong" with your child at all.
I don't know, why you had her evaluated. Beyond for speech.
LOTS of kids that age... have a fascination with things.
LOTS of kids that age... are like, your daughter. They are not AS PDD-NOS.
It is hard.... to diagnose a child that young, sometimes.
The Doctor's seem to feel, that she is NOT AS. And she is so young... to be accurately, diagnosed.

all the best,

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answers from Boise on

I worked with asperger's kids. Your daughter's speech does sound unusual. It is true that kids do lose their dx's sometimes. Sometimes kids within the autism spectrum that receive lots of therapy at a young age will come out of it and be "normal." If I were you, obviously you can take or leave my opinion, I would continue heavily with the speech therapy, as much as you can get with the idea of tapering off the older she gets. I would not label her or tell anyone else that she has this diagnosis, including your daughter. I would bet that with some therapy her speech will be more within the norm and she will probably not even need to know that she ever had this diagnosis as a child. Just keep it in mind and see if you notice any other symptoms so that you could nip them in the bud with therapy. Her diagnosis is not at all serious or anything to worry about, just to be aware of a few quirks that may come up here and there that you may need to help her visually with.
My nephew, though, has asperger's. He seemed pretty much on track except for some strange things in his speech, similar to your daughters in that there was no trouble understanding others or communicating, but the way he put his words together was a little different. But he also had TERRIBLE tantrums and difficulty transitioning.

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answers from New York on

Dear D.,

My own son has never received a formal diagnosis, but when he was a bit younger, he seemed clearly "different" enough that we had some run-ins with the whole social apparatus of diagnosis. So, I haven't been in your situation, but I've been close enough to have given the matter some thought.

Okay. First of all, I think it's important to be aware that the NOS in PDD NOS stands for "not otherwise specified." Honestly, I think the acronym should be IDK, for "I don't know." It refers to any child whose social or cognitive development is atypical but who doesn't fit into any predefined category or "box." You could put 100 people with NOS diagnoses in a room, and they'd all have completely different issues, and completely different gifts and talents too. There is really no "road map," and no stereotypical presentation, associated with this dx at all.

My own son, who turned 4 this summer, does not have enough ASD symptoms to warrant a diagnosis, but he does have some. It's like, if ASD is a "spectrum," or a yes-no question, he doesn't have it. But if ASD is a continuum, he's closer to the autistic side of the continuum than I am, or than many people are. He's basically extremely shy (though that's gotten a lot better in the past year), he's physically cautious and uncoordinated, he has some clear sensory integration issues (also improving), and he's super-smart, especially in the areas of math and science. He's a classic nerd and a rocket scientist (I mean, literally: some of his favorite topics of conversation are the solar system, jet propulsion, and "fire molecules.")

I wanted to introduce him at length to give you a sense of how far he's come, socially and sensorally, in the past 2 years. At 2.5, my son was literally terrified of water, sand, wind, and snow. Today, wind and sand are no problem *at all.* He still has some issues with water -- to the point where he's clearly not ready for swimming lessons -- but bathtime is no longer the nightmare it once was. And he has FRIENDS. Sounds like no big deal, but this is the kid I used to describe on FB as "The. Shyest. Child. Ever. In. The. World." I honestly didn't do anything to bring these changes about, save for some very successful "science experiments" involving simulated wind. N. just matured, and as he did so, he developed coping skills.

Our experiences with the whole diagnostic system have been pretty limited, but from what we have seen, there are people who get it, and who prescribe and practice appropriate therapies, and there are plenty of other people who flat-out get it wrong. (Not that they're bad people, or that they're wrong about everything, but no one is going to understand everyone.) The important thing is to trust your own experience and not let that be subsumed by an incorrect diagnosis or an inappropriate therapeutic approach. I really recommend a book called Raising Blaze by Debra Ginsberg. It's about a little boy who never did outgrow PDD NOS, but it's a fantastic "road map" for both working with "the system" and trusting your own observations, and never giving up.

Finally, while I think a lot of the therapies out there are terrific, it's important to remember that the science of dealing with ASD is in its infancy -- in a completely experimental stage. There's a wide range of diagnostic and therapeutic approaches out there, and there's no real consensus on any of them. I'm not advocating not doing therapy or intervention AT ALL, but I do think some of the interventions go too far. There are lots of kids (like, well mine) whose cognitive abilities far outstrip their social abilities, and there's a current in our society and educational system that wants to focus 100 percent on the social, at the exclusion of their scientific/mathematical/musical/etc. gifts. I personally think that's a huge mistake. Our kids may never be "people persons" but the world needs more than that. The world needs rocket scientists, brain surgeons, and, well, broom scholars too.

Best wishes, and sorry this was so long,


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answers from Denver on

So as was mentioned, PDD is in itself on the vague end of the diagnoses, and NOS means 'not otherwise specified' making it even more vague. That said, I do give the benefit of the doubt to the evaluator, assuming they are qualified, etc. It means they saw 'something'. She is also very young, and as someone else said, can evolve through AS.

The good news is this can provide you with a guide for explaining her 'quirks' and dealing with them if necessary. It can also get her extra help should she need it. And if this is the correct diagnosis, early intervention yields the best results.

The down side is really up to you. If you start to view her only through the 'lens' of PDD, you'll miss much of her other possible potential. Don't let yourself cling to this diagnosis and limit her. This is one small aspect of your daughter.

Bottom line, this isn't what you'll use to DESCRIBE your daughter, it's just one way that will allow you to continue to DISCOVER her. Best of luck.

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answers from Tulsa on

:0) I thought my child has sensory processing or integration disorder. No one, including professionals did. We didn't get any therapy. No teacher ever suspected anything was off.
Many of the other things I noticed have cleared up even though I would have put her in therapy if it were up to me, just to be sure she had every advantage, every chance to succeed.
When I lived in Texas, they had something called Early Childhood Intervention for birth to 3. Many of us assumed that meant from 3-5, there was no help, but we were wrong. There is actually all sorts of therapy and other services for kids who need it. Your evaluator should know.

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answers from Houston on

Her apparent diagnosis could be correct due to the speech and her fascination with inanimate objects, which can be a big clue with autism. There was a documentary study a while back that showed an autistic boy watching a highly dramatic movie, it was a very emotional scene with a couple crying and talking about the death of a child or something of that nature and the boy never noticed the actors, but instead focused on the couch in the background. High functioning kids can still have great relationships with people, make eye contact and live normal lives, though they can have some difficulties. That's why it's called a 'spectrum' because there are limitless variations.

I think what your Dr means about her losing the diagnosis in time is that she can learn through therapy how to cope with it and refocuses and use the correct speech, or that over time, you will be able to tell as she gets older and learns sentence structure and such that you will discover she is not on the autism spectrum at all.

She is still very young so it's really impossible to tell for sure. If it were my child, I would get her the speech therapy and help her with it and wait it out. It's always best to start early just in case.

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answers from New York on

When my daughter was three she would say "my pants are too fat for me."
They were tight. Just one example. Her language was a bit convoluted,
but she was happy and healthy. Then came her kindergarden screening.
I was told she would never attend a regular school, and that I should
change my expectations for her! Did she have learning disabilities, absolutely. Fast forward 23 years, she works in the operating room as a
surgical tech, she is a volunteer firefighter and EMT. She has received
two life saving awards. She overcame her disabilities with encouragement
and because she wanted to learn. Had I listened to the professionals,
who said she would not accomplish anything, she probably would not have.
Mothers know their children and I think you know yours. Sounds like she
will be fine IMO.

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answers from New York on

We are dealing with the same questions right now. Our son was evaluated at 2 and qualified for Early Intervention services. He received Developmental Intervention, OT, and later added Speech Therapy. When he was 2 1/2 a Developmental Pediatrician diagnosed PDD NOS. I was shocked. My son is very social and outgoing. He loves being around other kids and adults, we thought it was just a speech delay. Who cares what its called, you can call my son an ALIEN if it will get him extra help that he needs. He turned 3 in October and has been going to a special pre-school for the last few weeks. He loves it! We have seen improvements in his speech already, and although we didn't think it was possible for him to be more social and outgoing, he is.

This is just my opinion, but I will share it with you since we have similar situations: I think our kids have gotten this diagnosis because they have some issues, but doctors do not have a name for whatever it is. They need help to catch up to their peers, get as much therapy as you qualify for or can afford to pay for and see if there is a pre-school in your area. Just a warning, they will say your daughter is "pre-school disabled", which can be a hard label to swallow. Just remember that this does not mean disabled for life, it is just a phrase so she can get help she needs as early as possible.

Feel free to private message me if you would like to discuss this further.

I wish you the best of luck, we've just been through this and I know how shocking and scary this can be.

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answers from Seattle on

Yes, it is very possible to misdiagnose PDD/ASD! Please google Stanley Greenspan, who was one of the foremost experts on ASD (he developed the DIR/Floortime approach) and he wrote quite a bit about misdiagnosis. There are many kids with quirks and delays that have some of these symptoms and with therapy (some without) outgrow them. They released a study earlier this year that said while ASD is now diagnosed in 1 out of a 100 kids, they found in a follow-up study that 40% no longer carried the diagnosis. You are doing the right thing, getting ST. If they feel she needs OT, they will refer you (and that still doesn't mean she has the diagnosis.)

I have a quirky son who was a late talker with some minor delays in social skills and with ST, OT and developmental preschool he has made tons of progress. His speech has progressed tremendously. It is still a little "odd" right now but every day it gets more "normal."

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answers from New York on

Just my 2 cents:: My husband was diagnosed with autism when he was very young. He told me that the doctors kept on trying to give him pills and his parents treated him 'special' and people put low expectations on him. When he was 9, he had enough. He refused to take pills and told his parents that he was a normal kid. Weellll.... he is now a grown man (my husband) and is perfectly normal. He told me that he misdiagnosed just because he wasnt a cookie cutter image child like everyone expected him to be.

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answers from Raleigh on

PDD-NOS is atypical autism meaning that a child meets some of the criteria but not all to be listed as a classic case which is typically non verbal and meets most of the criteria listed. It's still on the spectrum and can be a spectrum within itself meaning very high functioning to a bit more degraded. My son sounds a lot like your daughter. He is constantly interested in things that are "off" for his age. He loves light bulbs, ceiling fans and to fix things like putting batteries in toys and can impressively take apart a doorknob and put it back together at the age of 4. He can talk - he is very creative & partakes in creative play (pretends to be a monster, etc)..he's delayed in speech but he can speak enough to where you would have to really pay attention to know there's an issue. He has great eye contact, he is extremely social and does not match any of the other stereotypes for autism hence the pdd-nos diagnosis..he also has adhd and apraxia of speech. He is almost 5 now and there's not a shred of doubt he is on the spectrum for me....I have a nerotypical son who is 3 1/2 and the differences in their development are night & day. If i did not have a son that was NOT on the spectrum I might have continued to question the diagnosis....my NT son uses slang and picks up on things differently than my son on the spectrum - I actually thought my NT son was advanced b/c of the differences but he's neurotypical...I would say my son on the spectrum is more oblivious to some things that he should not be. It's really hard to nail down but I would not focus on the diagnosis. I would focus on therapy and doing everything possible to level them out as much as can be. I think there's so much stigma with the word "autism" that everyone immediately thinks of rain man. Rain man was an autistic savant and only 10% of the spectrum population....Other examples are Dan Ackroyd who admits to have had an aspergers diagnosis and agrees with it. I think it's crucial everyone sees examples such as that so they won't immediately think of the worst possible cases or the stereotypes out there...my son didn't fit the bill for anything I felt autism was....I thought he was just delayed but I get in now. (Lots of reading about it as well) - The education on autism has been truly enlightening.



answers from Hartford on


My daughter is in a similar situation. She is 3 years old now but was diagnosed with an autism spectrum disorder at about 20 months. She had a lot of early intervention and when she was reevaluated, the doctors basically said that if this had been her initial eval. she wouldn't have received a diagnosis because she no longer fit the criteria of the disorder.

I am also a special education teacher and have worked with many autistic children. It is true that you either are autistic or you aren't. It doesn't go away. However, because it presents itself at such a young age, and in similar ways to other developmental delays it is often misdiagnosed. This is why children who are diagnosed early sometimes lose the diagnosis as they get older. Doctors often refer to this as "falling off the spectrum" which I think is a nice way to say they were wrong in the first place.

I try to look at it in a positive way. My child is getting early intervention services that will only help them. They certainly aren't going to hurt. My daughter got early intervention before she even turned 2. At that time she wasn't talking at all, so obviously she was way behind other kids her age. After one year of services both her receptive and expressive language skills are well above average.

In response to the person that was saying "why can't parents just back off, and it's normal for 3 year olds to be different". The reason that doctors are diagnosing so much and at such an early age is because without a diagnosis you can't get early intervention services. Also, you only get early intervention services until the child is 3 years old. These services are critical and can make a world of difference. So who cares if years down the road my daughter loses the diagnosis. I'm not going to be mad that they were wrong. I'm going to be happy that I got early intervention.

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