2nd opinion?????????

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My 19 month old son had his second evaluation for ASD today, the Dr that gives the diagnosis was not present during the first appointment, only his colleague. Today he was in the room and after 15 minutes of being there he said "I don't think he has ASD". I'd love to hear that my son doesn't have ASD, but after a thorough evaluation, NOT AFTER 15 MINS OF BEING IN THE ROOM!!

My son shows some red flags: doesn't respond to name(80% of the time), tip toe walking(increasing a lot), sensory issues(doesn't like to be touched, sometimes gags himself with his hands, pulls his ears), he doesn't talk, somewhat obsessed with cars/wheels, likes to line things(doesn't get upset if disturbed), bites and scratches sometimes, doesn’t point, seems to have allergies, had chronic ear infections when younger, seems to have stomach issues, sleep issues.

He also shows good signs: good eye contact, loves hide and seek/peekaboo, not so much of a picky eater but will have to chase him down to eat, smiles while looking at me, follows a couple of commands(mainly things he likes, like going outside and riding his stroller, recognizes when I say "no" 80% of the time, likes new places and new people, motor skills seem ok, doesn’t stick to a routine, imitates brushing teeth, brushing hair, cleaning ears with q-tip (he can’t do all of this right, but he tries), switches activities with ease.

I know the red flags could be normal, a lot of people say “my kid used to walk like that” “my kid didn’t respond to his name” “my kid didn’t talk until he was 3” “my kid loved wheels”. But my son is showing more than one red flag, not just one or two things like other people tell me their kids were. I’ll be the happiest parent if Im told my son is not on the spectrum but only after having someone spend more than 15 minutes with him, even if he has ASD, I’ll be happy because I’ll know we can try get him help, but not after seeing only a little of him.

Am I crazy for this???? My wife is in denial asking me if “I know more than a Doctor”, of course I don’t, but I know what I see, and I know 15 minutes is not enough, even for an expert. The downside to this Is that everywhere else I’ve called say there’s a 1 year waitlist for an evaluation, it irritates me because I feel like my son’s time was wasted.

What type of doctor did the non-diagnosis? Was it private or through the county? Generally speaking the County Zero to Three dept is likely the best place to go. It is free, and they often are more familiar with the early signs of developmental issues than other places.

It was a private office, a Developmental pediatrician. We also went to the state's ECI, and they said no autism evaluation is available through them, only speech and OT, which he'll get starting in January. ECI said they offer therapy like ABA, but only after a kid has been diagnosed elsewhere.

About 5 years ago, a pediatrician told me my first-grade son couldn't have HFA because I told the doctor I didn't think he was a genius. Then, when I still wanted a referral for testing, he tried to send me to a Christian counseling center for adults with depression and marriage problems.
So yeah, second opinion for sure.

Did you go through the state or did you mean the county? ECI is usually done on a per county basis. If they are offering the interventions your child needs without formally diagnosing, it may mean they don't have quite enough info at this stage to do a formal diagnosis. If you are able to access services based on need, then a formal diagnosis is not needed, yet.

We had our formal diagnosis done (for educational purposes) by the school district (after age 3), which in our case, (which I understand is uncommon) administered the ADOS (the gold standard for autism) in addition to the other stuff that goes with it.

Have the ECI folks indicated that you would need an outside diagnosis for any practical reason?

Edited to add: Just because some people use ABA, does not mean ABA is right for your child. So I meant --has ECI indicated that your child would benefit from ABA? What would be the purpose of it for your individual child-- is I guess what I am asking. Not everyone needs it and it is not something we pursued or was interested in doing, is why I ask.

Last edited by ASDMommyASDKid on 04 Nov 2016, 11:22 am, edited 3 times in total.

You can't tell till the major shift into abstract thinking

I am concerned you are trying to push the autism diagnoses on your child and your post is coming off as you want your kid to be autistic to justify the red flags and that can be very harmful for the child and it seems like to me you are having anxiety about your son possibly having autism. It is possible to have symptoms and not be autistic. I would focus on the help he is currently getting for his needs like speech and occupational. I also recommend The Difficult Child by Stanley Turecki. He also talks about children who have tactile defenses or who have a hard time with transitions to change, etc but neither of them are autistic. That might change your perspective. It's also possible your kid is too focused on what he is doing to look at you. What is he currently doing when he doesn't give you eye contact? Is he so focused on playing he isn't able to shift his attention from his activity to you? It could be a transition issue or a over focus issue.

But yes I agree that you can't decide in 15 minutes a kid doesn't have or has autism. Doctors only go by what they see, not what you tell them so that can make it very difficult for a parent to be taken seriously because some children "put on an act" in the office so they act normal in there so the doctor assumes that is how the kid is all the time and the parent looks like they are the crazy ones and wanting their kid to be labeled and trying to push for one.

ECI was done through the county, sorry. During the ECI evaluation they told us they don't evaluate for autism, just for speech and OT, my son showed a 12 month speech delay according to their evaluation. They said at the moment they can only provide ABA therapy when kids are diagnosed with ASD.

I may sound as if I want my son to have an ASD diagnosis, but that NOT it. I am afraid that he could be on the spectrum, but I only want him to have a thorough evaluation, if after that they tell me he is on the spectrum, I'll be happy because then we can know what we're working with, I know ABA/methods are not effective for everyone, but at least we could try it to see if it works. If he ends not not having it, i'll be happy as well. I just want to do what's best for my son without wasting time, if speech and OT are the only things he needs, then great, we can focus on that. When we're calling him by his name, he's usually playing with something, watching a cartoon, or even when he is just walking around the house.

I know what you're talking about, since he's very curious, and likes new places, every time we do to a Dr. (and he's not being examined, ears, mouth, chest, etc.) he acts completely different that at home. Sometimes at home he's showing a lot of red flags, but as soon as he's at the Dr. office he's different, but only because it's a new place.

One of the things that was presented as a possibility when we received a diagnosis from the school district was they might need to video tape our child to verify he acted as autistic at home as he did in a different environment. We did not need it b/c they didn't think they would get a different result at home, and he was presenting as sufficiently autistic, I guess, that it was not worth extra time/effort/money to bother with it.

If your child acts more autistic in the home environment, i don't see why you could not video tape your son at home and show the tapes to whatever diagnostic team, you end up trusting.

As far as whether or not it is worth moving heaven and earth to get a diagnosis just to access ABA, I will leave that for people to post who have actually used it and can tell you what it is and is not useful for. I haven't used it other than for post-meltdown diagnostics, (primarily school-based) which is mostly just common sense about finding out what behavioral triggers a child has and how best to deal with it.

STOP giving this guy advice everyone. We have a potential abuse case here.

This poster has made two other threads on the exact same topic. It appears that the second was added to the first.
viewtopic.php?t=330574

He is sadly obsessed with his son being ASD. He was told over and over again that the symptoms he believes can be attributed to autism are unlikely to be so.

oromero910, you need help. Like, NOW. Stop putting your anxieties on your son. This is not OK. And its not OK to be using our kind efforts here at wrong planet to use to feed your hyperfocus on your son's potential "illness."

Your son is 19 months old. What he is doing doesn't scream autism, but it doesn't mean he isn't. A coworker's son was diagnosed at 20 months, but his presentation was so off the charts my dog could have diagnosed him.

The problem is your son is young, and your child can have delays and not be autistic. My NT daughter didn't really start truly speaking until around age three. That is words everyone could understand and sentences. My kid also choose to ignore her name because she was too busy playing most of the time.

All the supposed red flags can be normal 19 month old stuff. NT 19 month olds can be picky eaters, hand gag themselves, have sensory issues with different things. My DD used to line up her little plastic salamanders and other toys at that age for hours.

My husband was not diagnosed with ASD until our daughter was 6. Had I had that information before hand, I'm sure I would have been a hot mess worrying about her speech and other stuff. The pediatric head of that clinic did a cursory evaluation on her because of her father. Aspie girls present differently. NT all the way according to them.

ASD kids can present different at different ages. I know kids that didn't get a level I diagnosis until age 5. Why? Most of their issues where in social settings, and that really doesn't become crystal clear until kids stop parallel playing which is around ages 4,5,6.

If it takes a year for an evaluation testing center like Cleveland Clinic, I don't know why you wouldn't even get on the list. In 12 months your son will be 2 years and 7 months old. That is still really young for a child in my area (who does interact with some people) to get an ASD diagnosis.

Also, if your go through the county for speech, OT and whatever else your son may qualify for, that is a paper trail the testing center can evaluate.

Let's say you went to a blue ribbon ASD testing center, what would probably be offered at 19 months old is not much more the county would be doing. Speech, OT, and a whole lot of floor playing time. ABA does not work with all kids, and all ABA therapists are not created equal. You can get a s**t ABA therapist and make things a 1,000 times worse as in the kid flat out refusing to go or participate.

My co worker had breast cancer. She told me getting the ASD diagnosis for her child was very similar to her cancer experience. It's all hurry up and wait wait wait. You find out you have cancer and you want it out and cured NOW! That isn't how it usually happens. You get surgery, then have to wait for chemo. You get chemo, then have to wait for surgery or radiation. You ask your pediatrician about ASD. You wait for a developmental pediatrician (who most doctors around here default to for an ASD diagnosis) or the mega university testing center. Then wait for clearance from neurology and other specialties incase it could be something else. It can be a long process.

As for specialists only taking 15 minutes. My husband's specialist told me he knew with 10 minutes my husband was on the spectrum just talking to him. The testing was just a formality for my husband's work. This doctor is the bullet proof adult diagnosis go to guy.

If the doctor blew me off, I do the ECI offered things, get that year long away appointment and just enjoy my 19 month old. Unless the 19 month old is extremely low, there isn't a whole lot one can do except watchful waiting. You won't be doing 80 hours/week of ABA on a 19 month old.

I know this guy will probably ignore all this, but I wrote it for others who might be lurking.

Especially the fact that he has good eye contact and is playing games makes me think he probably won't receive an ASD diagnosis. You should follow it closely of course and have him re-evaluated. The expectations for development at 24-30 months are much higher and will more clearly show any issues. An ASD diagnosis isn't very stable until roughly 30 months in any case.

My son was very similar to yours at 19 months with the exception that his eye contact was clearly off. He could play well and was relatively calm and happy but had repetitive behavior issues (spinning everything), the eye contact problems, and was not speaking. He too was not diagnosed at 19 months but later was at 26 months.

You mentioned some sleep/stomach issues. If I could make one suggested, I recommend that you treat all of those aggressively. My son had major sleep and respiratory problems. He clearly has sensory issues and so allergy and sleep issues would overwhelm him mentally and physically and he could not function at all. Once addressed, he made rapid improvements in all areas.

The ECI programs where I live (Ohio-USA) offered early intervention classes (2.5 hours 5 days a week) for my son at 19 months in addition to speech and OT even though he did not have an ASD diagnosis at the time. It was a big help to him and the teachers and therapists actually helped him get an early and proper diagnosis that allowed us to get started with ABA. I am not sure if you have something like that available.

My son is now 5 years old and is doing well. He is not yet in kindergarten but I have no doubts that he will be successful in school probably without supports. Much of it is due to the early interventions that he has had.

It's not abusive to have a kid evaluated for autism, even if it turns out he/she doesn't have it. You do realize the test is mostly just playing with toys while a psychologist watches?

His reasoning is that there is something terribly wrong with his 18/19 month old baby because he runs off and doesn't come back. Or because he doesn't share his toys. Or because he doesn't play imaginary games. None of these activities are age appropriate for a 18 or 19 month old baby. He is expecting his son to express talents that we don't normally see until 4 years of age.

It's the same as telling everyone that your 6 year old is disabled because they aren't reading chapter books, or expecting your 10 year old to play flawless violin. Expecting children to express skills far beyond their developmental age is a HUGE sign of abuse. It is one of the things that we are told to look for in evaluating if children live in an abusive household.

By playing this game with him, where you act like his concerns are reasonable, you are playing into his fantasy that there is something terribly wrong with his son.

It sounds like his baby has a small speech delay. Again, the OP exaggerated the problem, saying that he has a 12 month delay. From what he tells us, it's pretty clear that this 16-17 month baby is using language like a 12 month old baby, making it a 6-7 month delay. So, that's just over the line of being remarkable for a boy. Something to be addressed but not something to panic over.

Most parents are alarmed when they first suspect their child might be autistic, and it's not unusual for them to catastrophize the situation. I've seen many posts like this one before. This guy's kid may or may not be on the spectrum, but I don't think it's abusive for him to worry and want to find out one way or another.