Confused by what the doctor keeps saying...

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Agree with Waterfalls, and he sounds somewhat like my son.

My son had "nothing" when he was a toddler. Mostly because although I knew something was different about him, I didn't understand what, and he was so dang smart, verbal and charming that I just believed everyone when they said "he'll grow out of it."

Looking back the "something" that I wish we would have done for him was sensory integration based OT. I think at the age of 3, 90% of his issues were caused by what I now realize was sensory processing disorder. He has motor planning issues, ocular-motor issues, gravitational insecurity, visual processing issues, and a whole host of other things. I believe that early intervention with an OT trained in sensory integration would have benefited him a great deal.

Thank you for your responses. If to doctor had offered a just a few of the sentences all of you have offered her responses would have made a lot more sense. I guess this topic wont exist for much longer or will get pushed down to the bottom!

Just a short note to some suggestions/statements. So the somewhat hands off attitude is coming both from the hospital team and his school (which is a NJ public school and doesn't seem to be short of money for anything). The hospital is pretty much giving a wait and see keep on eye on him vibe, whereas the school basically says he is (currently?!?) a well behaved smart boy who usually completes every task in the classroom and IEP pretty quickly. My private health insurance is by pure luck super autism friendly and would pay for almost any therapy from dolphins to babysitters. Very lucky in that regard. So I don't think the school is trying to skirt his needs or anything.

The advice offered in everyone's comments makes a lot of sense to me in this light because neither the hospital or the school is pushing for anything now because his needs are not that great right now but they might widen later...

I think this is what it was. Three is pretty early for a diagnosis - DS had just started with meltdowns and we didn't have enough specific information to even think about a diagnosis. One of the things I've learned from families that have a mix of NT and AS kids - there are all kinds of things AS kids have to be taught that NT kids just do. Waving. Clapping. Climbing a ladder and sliding down a slide. Saying please and thank you. NT kids often just pick this stuff up, where at 3 I was meticulously breaking down using playground equipment into steps ("hand, then foot, then hand" touching the appropriate hand then pointing to or touching where it needed to go.) I thought that was what parenting was - turns out it was more like what Early Intervention is. I apparently did so well with it that DS "flew under the radar" until we got to communication and emotional regulation issues and things started to fall apart.

The communication issues solidified into a Pragmatic Speech Impairment (an important collection of words in the lexicon of a parent whose kid is "high-functioning") I wish we had not trusted the school so much and investigated his just-barely-above-average score in Pragmatics - we'd have gained a lot of ground a lot earlier.

One of the things we do with DS: we carefully follow his moods and his behavior. They are the best barometer for whether his needs are being met or not: he rarely knows when something is wrong (or can articulate it.) Keeping an eye on how your child expresses stress (DS had meltdowns, some kids just withdraw quietly, so keep an eye out for either) and try to match it up with what is going on with him: that will help you figure out if therapies are needed and which ones to ask for.

I chuckled with a sense of recognition with that. Yes. That is how it was with my son, too. I didn't really realize that not everyone had to teach their kid how to climb a slide's ladder and that not everyone had to set aside time for "practice" when the playground was quiet so their kid would be able to go when other kids were there. And the hand-over-hand teaching my daughter to point?....Well, even though she was my second, I still just thought that some kids just don't figure out how to do these things by themselves.

And the truth is, I was right. Some kids just don't figure out how to do these things by themselves, and there is a reason for it.

Not to mention how much work it is when you have to teach motor skills even NTs have issue with like shoelaces. We had to table that, again, and we are using the I am going to tie your laces kind of loose so you can slip on your sneakers method to encourage independent dressing.

I was pleasantly surprised to read somewhere recently that that is "cool" in some subset of American kid society (skateboarders, I think)--so yey! (by mistake))

Agreed. Very important when raising an ASD child.

I think knowing when something is wrong and being able to articulate it is very hard to teach, and very hard to learn later in life, so helping with that aspect of pragmatic language when your child is young is one of the most important things you can give your child.

Totally blown away by the fact that this Monday during a 3 month follow up the same Doctor, who has been using phrases like he'll be fine and he wont need life time services etc, does a complete 180 and says that my boy will not be able to cope with mainstream schooling socially and that despite how smart he appears and despite his test scores his academic skills will prevent him from moving past 1st or 2nd grade outside of special education. This was 3 months after saying he wouldn't need long term interventions and about a year from when he was diagnosed with the supposed statement that he was mild enough that he would be fine with no services and that college, jobs, wife, kids were all going to be open to him.

At the hospital on Monday my son was so misbehaved during the appointment that we had to take breaks in the middle. What should have been 30-60 minutes lasted 2 hours and his behavior still do not improve. I had never seen him acting up so much it was incredible. He talked gibberish, he moved the furniture around, he intentionally broke the crayons the doc gave him, he refused to color inside any part of the pictures or to trace any letter--instead he drew big circles around them. He wouldn't name any shapes and intentionally counted things out of order (1, 2, 5, 6, 4, 7, 33!! he said with glee). He refused to talk to the doc in his regular voice and instead used this high voiced shriek. He made almost zero eye contact with the doctor except when the doctor made an attempt to be funny. My son was insane. He picked his nose and wiped it on me! (I have never seen him pick his nose before in my life!) He said he didn't know the names of any of the kids in his class and said he didn't know if he likes school. The doctor suggested we take a few breaks, but when we all went back in the room the same things happened. He also just kept on flapping those arms more than I have ever seen him do it. It was...I shake my head with like...I don't know what.

This was not a good visit. Also, this is not how he acts....ever. I would do one or two of these things in a day maybe and if he did it would be like what the hell was that you usually don't do that?!?! But this was a true display of concentrated lunacy. He was like a guy trying to get fired or something is the only way I can describe it.

So the doctor takes over for the doctor talking segment at the end of the meeting I guess and says that my son exhibits many spectrum behaviors and that he will never be able to attend school in a typical classroom and will need to be in a special education classrooms from here on out. I was shocked despite my sons totally unexpected behavior because this was the same doctor who just 3 months ago said he was doing great and would not need long term services and who from the very beginning was saying he would do "fine if we did nothing." Clearly the doc put that out there because of how he was acting on that particular day as opposed to what my son was like on other days but the 180 is...I like shake my head it is so dizzying. Also, I had brought the current IEP from the school with me and showed it to the doc, it clearly said the plan was to have my son in regular kindergarten next year with OT and PT done outside the classroom and when I asked for an opinion about retesting him at some point to see if he still meets criteria for autism or something else. The doctors response was "his diagnosis is a chronic life long condition. He will not be able to attend school in a typical setting and if he was put in a typical classroom for kindergarten he would fall behind socially and academically and although he could make it through 1st and 2nd grade by 3 grade he would need to return to a special education classroom. He will need special education assistance throughout his schooling." That is almost a direct quote. The doc said the same thing tree times in my memory repeating special education for life, will not have the social skills to attend typical classrooms, and his intelligence will not translate to academic skills.

I'm not looking for a magic wand here...I am looking for some consistency in what I am being told not about 15 years from now but what to do a year from now. How can a doc be so hands off for a year, and then suddenly because he acts up for the first time in 4 visits over that year, suddenly be giving out some pretty much truly dire statements?!?! Needless to say I was devastated and didn't want to argue or talk any more about it with my son in the room so I packed up and left.

The end note is, after basically rehashing the past 4 years of his life in my mind all night long, I bring up the meeting with the doctor to my son's head teacher at school. She countered basically everything the doctor said and then said she had never seen any behavior like that from my son. And let me know that at the next IEP meeting she had planned on talking about what a transition to a mainstream classroom would look like because that is the plan. (Before anyone says anything about money this school is a NJ school and has bundles of money from the state and the local school district. Money is not an issue. The kids get what they need.) When I told the head teach the three things the doctor was saying she literally got angry at it.

I think I have a 104 degree fever from all this contradictory craziness. I'm so tired. In my mind the doctor from this prestigious hospital is basing everything on what is seen in the moment and is not taking a long view of my son. The head teacher at the school said she would bank her 30 years in special education that my son will not be returning to a special education classroom. It feels like I am reading to different books with the same plot but with different characters and dialogue. What gives man?!?!?!?

Your story reminds me of when my son was at death's door in the PICU.

Five teams of specialists did their thing and each group had a different recommendation. One guy whispered very passionately that I shouldn't listen to one of the other teams because they were just trying to save money and my son would really need a drastic and dangerous surgical procedure... and the Doc in charge said, "listen to the experts and then make up your mind."

! !! !

And I had no idea! I am not a doctor! I asked how I was supposed to decide, without a medical degree or understanding of the issues and their attitude was "learn fast."

My advice is:

Discount what happened on the most recent visit to the doc.
An exceptionally bad day is not a guideline for what is going to happen on an average day and most days will be average days.

Trust the people who see him every day over the people who see him once or twice in a year, unless you have very good reason otherwise.

Trust your own sense of things, but don't give yourself over to fear.

Good luck!

I think you should give more weight to what the teacher said than what the doctor said. The teacher is basing her opinion on seeing your son nearly every day; the doctor's opinion is based on one extremely bad day. YOU know your son's behavior that day was atypical, and your opinion is also "professional" when it comes to him.

Good advice. My sense of things truly truly is nothing is perfect in this my son's situation and it never will be but it will indeed be OK at the end of the day for him, with plenty of tough spots for sure. But I simply hope as a parent I can provide him with a comfortable enough space so he can develop a comfortable sense of himself...

Your story from the PICU is like from a movie...truly intense.

My gut agrees. It just boggles my mind though that a doc with good bona fides from a big time hospital would flip flop so easily and in such a short time frame.

The doctors have to create conclusions based on very limited information. That is why we learn that their opinions are far down below OURS. YOU are primary. YOU are the one that receives information from a variety of sources and figures out what applies to your unique child. I know that sometimes a parents own wants, desires, background and prejudices can color the process, and sometimes those parents REALLY need to hear what professionals say, but I don't think from what I've read that you are "that" parent, so TRUST YOUR INSTINCTS.

Remember to read, read, and read. Gather all the information you can and then decide what best fits your child and what you trust most.

All that said, what leaves me curious is what was stressing your child at during that visit. It is obvious something was, because those behaviors don't just appear out of nowhere; there is usually a trigger or reason. Identifying that is a big piece of the "treatment" process for you and your child at this age. I strongly recommend that you go through a step by step and detailed situational autopsy starting from the day before the visit to see if you can find any type of pattern or indicator of what went wrong. For my son, a huge trigger was simply change in expectation: anything that didn't happen the way he assumed it would could start a rapid degrading of behavior. But, it could be any number of things. THIS PROCESS is important for helping your son through these years, and will continue to be for most of his youth.

Also, remember that you don't have to reach conclusions about his future today. He is growing and maturing and changing. There will be magnificent leaps forward, and stunning leaps backwards. You can't let them knock the wind out of you. Raising ASD kids is a day to day, minute by minute process. Sure, you keep part of an eye down the road, just to be sure you don't do anything that will limit your options later, but mostly you deal in the here and now. Solve the problem in front of you. Define and meet your child's needs. NO ONE can tell you with certainty what his future will be, but there are HUGE REASONS to have hope and faith it can be a good one. But in any moment, you may need to divert and change course and get a specific need met. You'll have to be flexible. That is just part of how it is.

Just FYI, once I had things set with the school and felt comfortable with the "team" my son had (which did have to get revisited every year), I stopped talking to the doctors about it. I don't have endless hours in my day, and there was nothing immediate they could provide me. I just went back to the specific areas experts when I saw something changing I knew I needed to head off, and then I tried to keep it focused on that specific concern. I've found the best experts on helping your child day to day aren't the ones with medical degrees, but the Speech Therapists, OTs and Psychologists.

Anyway. I know that at this stage it is still all confusing and highly overwhelming. You are still in a parenting stage that is, simply, exhausting, and you probably are running on empty most of the time. That will get better. And you'll keep reprioritizing and seeking balance, which help. Sorry that you've had to deal with such erratic and, honestly, inappropriate medical advice. Stow it away in its place and move on.

Best of luck to you.

At age 4, my son was hospitalized for 10 days with pneumonia. For the first 5 days the doctors (they changed every 12 hours) regularly flipped between "antibiotics will probably clear this up" and "he's probably going to need a chest tube" -- and the opinion given pretty much correlated to whether the doctor walked in when his temperature was normal or when he was in the middle of a fever spike. A lot was just their impression of how sick he looked at that moment.

I think the same thing happens with doctors who are diagnosing autism, especially if they only see the kid a few times a year and aren't involved in the actual therapy. You've gotten a dx that places your child "on the spectrum", which helps steer you toward the right therapies -- what more do you need from this guy? The truth is that nobody can know whether or not mainstream education will work for your son until you try it. Everyone has educated guesses, although some may be based on more experience than others!

In my heart I know it but everything still hits you in the gut. I guess when all this started I saw a more, I don't know, classic version where it would clear. So far this entire thing has been smoke, mirrors, and trap doors. One day it is he definitely isn't autistic and all his skills are fine, then it is, he might have delays get him tested, then it is he has delays but he isn't autistic, then he is, then he is just for the paperwork, then he isn't, then this, then that, first a potato then a potato?

I will take what you've said to heart. I feel like I have missed almost all of this young mans life...

Can you expand on that a bit?
I don't understand what you mean and it seems like it must be something important.