Confused by what the doctor keeps saying...

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This is not a complaint. I am sorry to clog things up with another topic. I am looking for input on my sons particular situation and to see if this happens a lot or at all.

Short story is my now 3 year old has been diagnosed as autistic (on the new scale I was told that he would probably be mild). The diagnosis is from a respected wing of a big name hospital in Philadelphia. The diagnosis could not have come from a more respected place in the area. They used Ados. The doctor who diagnosed him said it was not in doubt or a close call. She then proceeds to say he would do OK and be fine if we did nothing to help him along. The doctor and her team created a detailed report and the recommendations included a few general suggestions like "find groups that work on social skills," and "contact your local school to inquire about possible services," (She did recommend two specific playgroups which my son did participate in and he did start going to school where he is in an integrated classroom.) However, although the report contained a list of therapies such as ABA and Floortime she did not push to do ABA or any other types of mainstream "interventions" etc. At the time of the diagnosis and at the subsequent follow up she said repeatedly that he would "do OK" and "be fine" even if he received no therapies. When I pressed her what she meant by that she said jobs, living on his own, marriage, kids would all be available to him and that he will be able to do whatever he wants. That is it. That is the story.

I am not looking into insights on my son but rather my question is is this a common action from doctors at all? Wailing and gnashing of teeth wouldn't help anybody of course coming from their doctor. And support is awesome. But I can't help shake the idea that she is either softening things up for me as a parent or that she isn't being honest somehow about everything. It sounds lame I know and this isn't a complaint or anything, but repeatedly telling a parent that doing nothing is an option let alone one that would result in everything being OK just doesn't sound correct to my ears.

So my question is is this a common action from doctors to parents? How does this normally go? Is this it?

Hi,

What is sounds like is that based on this report, your child is very mild. A lot of us back in the day were undiagnosed and were/are "fine." That said, what you choose to do depends on your particular child. There are children who need varying degrees of support and at your child's age, "nothing' may very well be what you choose. I would look at the report in terms of the details and how your child is currently doing to decide. Some people are also more interventionalist than others, and frankly it is more art than science.

The main thing that gives me pause is the fact that your child is diagnosable by 3. Usually the really, super mild cases don't get a diagnosis until red flags show up with more complex socialization around 7 or 8. Then they tend to need pragmatic speech and socialization "advice" even if nothing else.

What are your son's strengths and weaknesses?

Edited to add: Autism is a spectrum, so your son's profile is going to be unique to him just like anyone's traits. One good question to ask yourself is if you were to get him some kind of therapy, what is it that you think he needs improvement in above and beyond the normal interactions and teaching for any child his age? If the answer is "nothing," but you just feel like you should be 'doing something," then maybe nothing is OK, and it is a good time to read posts, read other resources and get a lay of the land to prepare you for needs that may arise in the future.

Also, keep in mind these needs are not static. Autistic children can have spurts in improvement that do not coincide with those for NT kids. So sometimes they fall behind in something and need help for a given time period until they "catch up."

Not sure how common it is, but we had a similar experience when DS was diagnosed at age 5. It was basically, "Here's your diagnosis. Ask your school for an IEP. Have a nice day." They handed me a 40 page packet listing the name of seemingly every therapy provider of every possible therapy in the county (some of which had outdated phone numbers and nonworking websites), and had an intern call me a month later to suggest resources I'd already found myself by that time.

I kept walking around thinking, "I don't know what therapy he needs. I need a case manager." It took me about a year to realize that *I* am the case manager -- one who cares deeply, but is woefully inexperienced in navigating the local scene.

For the kids on the mild end, when there is not a huge concern about language development and the child is fairly interactive with adults, there definitely is not the urgency to get early intervention that there would be with a non-verbal, non-communicative, non-interactive child. Your best bet is to talk to other local parents -- how are your kids similar? How are they different? What did they find helpful or not worthwhile? And to think about what are the key issues that led you to seek a diagnosis in the first place, and look for help to address those.

Strengths: Smart, verbal skills.
Weaknesses: Slightly clumsy, fine and gross motor skill issues (although he is very very tall for his age and is stronger than he, thankfully, knows).
Others things: Gives but doesn't sustain eye contact. He flaps his hands when he is really excited. He is hesitant with physical things. He has a good sense of humor and nice imagination.

To be honest he was a difficult baby. He wouldn't take a bottle, he slept poorly at night, he cried more than I knew a baby usually cries and I always felt something was going on. But I was told he was just "colicky" as our original pediatrician put it. We moved and switched pediatricians and after a few visits I said I had always thought something else was going on. He said well lets get him tested. Early Intervention came in said he had sensory issues. I wanted a second opinion and arranged for it at the hospital. If we had not switched pediatricians and if I had not brought it up to the new pediatrician I know it wouldn't have come up yet.

I've read all the books and got a google PhD very quickly and use what I have found as I can best do in daily life. We did the social skills groups and will sign him up for them again this summer. Although again, at the last meeting with the developmental pediatrician I had the same sort of experience as before when talking about the social skills group for next summer and beyond. The doctors response was tantamount to an "oh are you going to do that again?" and I was like I figured such groups would be the norm through high school etc and she pretty firmly said no no no shaking her head and smiling saying that wont be the case he wont need them. Same thing at school, he has an IEP (which he flew through and we had to redo pretty quickly into the school year) but none of it is for autistic behaviors it is all OT and PT. The teachers all talk about him like he can do no wrong. I feel like there is double talk going on with him which is what prompted me to put a topic out there to see if this is a regular thing or what.

Zette, that is sort of how it felt at least. It was like the hospital team said "This is what we saw. Based on that we diagnose Autism. Here is a list of general things you can do. Please come back in 3 months for a follow up." I didn't really feel like I was off on my own but I certainly felt like a few pages must have fallen off the report or something. It was all so anti-climactic and almost laissez-faire.

What led me to seek a diagnosis had almost disappeared by the time he was diagnosed. A baby who was upset all the time had become a toddler who was slightly wary of other toddlers but who seemed generally content and would parallel play. He had gone from being upset all the time to being cautious some of the time. When I told a friend who has an older child with more issues she looked at me like I was crazy. So I can totally see how things wouldn't have come to the fore with him until 7 or 8.

But it sounds like their really is a sort of, I don't know what to call it, a kinda loose attitude from the professionals with certain kids then?

It might be similar to having a bad cold with a fever. Is it painful? Yes. But do you need a doctor? He can't/shouldn't do much for you and he has patients with bigger problems. Do you do something? Yes, you support your immune system with vitamin C, zinc, rest, fluids etc. and take a pain killer if desired.

Yes, your son is "off" the norm, but that doesn't mean he needs therapies. They are there for those who need tons of help. Your son will always be a little "off". Therapies can't change your son into a neurotypical person. It won't happen. So, give him therapies if he needs them, but if you are giving him what he doesn't need, he can be really confused. Hand flapping is okay for age 3, 4, 5 and maybe even 6. He might move to a different stim or nothing at all by the time he is old enough that this would bother other people. For looking at people in the eye, I think this is only important when he is ready to interview for a job. I say this because adult aspies and my son tell me that they can't look at people in the eye and think at the same time. So, yes, you can condition your son at age 3 to look at people in the eye, but don't expect him to process any thinking at that time. Not worth it and very confusing in my opinion.

So, at this time, be a great parent to your son. Get to know his ways and how he thinks. Become the expert on your son. Play, play, play. Develop that relationship. Have fun. Take cues from him. He'll only be this age once.

What I remember about this age was the night terrors. They were just horrible, and yet no doctor could help me. I think after the first one, I always insisted that my husband get up and sit through it with us. I just couldn't do it alone with my son. So I needed support, but not from a doctor.

My son was dxd at age almost 9 and didn't receive therapy until age 11. Pragmatic speech therapy. But through all the years, we have adjusted our parenting and made decisions about schooling, activities, socializing, etc.. Does that make sense?

I found the direct service providers much more helpful for helping me understand. Especially if the OT is for sensory issues.

Not everybody needs everything, so yeah, they are not going to push everything on everyone. You do what your child needs. So, no, there is not a need to panic and do everything. It sounds like your child is already getting some services, so it is a matter of figuring out if you think you have the right mix for your child. (The school may or may not be a trustworthy source as they tend to want to save money) OT and PT are common needs for autistic children. We received speech and eventually OT and honestly we probably were not too far-off from needing PT or possibly at least special P.E.

Edited to add: Speech is not just for non-verbal kids. Verbal kids often need pragmatic speech help, which often includes games and help in turn taking and other social skills.

Doing nothing sounds ok to me, since your son sounds mild, but just watch for issues that might arise as he gets older, and continue to teach him social skills and manners yourself.

I just saw this blog entry, "Decoding the High Functioning Label" and thought of this thread. It may help give you some perspective on what it may mean for your child to have mild autism:

http://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/

Exactly.

I know autism is a scary word, and everyone talks about how important early intervention is, but that is really for a certain subset of kids on the spectrum. It is great that you've gotten the information because parenting an ASD child is different from parenting a NT child, but most of what your child needs most at this moment should come from you figuring out his unique needs and sensitivities, and responding and guiding accordingly.

As another poster said, get to know your child. Get to his level. Relate in a way that no therapist ever will be able to.

When he gets into the school system, it will probably be time for speech therapy (pragmatics), OT, and so on, for there will be specific gaps becoming apparent that will affect his ability to function in a school environment.

But right now - he should have the luxury of being who he is, developing at his own pace, feeling understood and loved. No one is better for that job than you.

Enjoy

(PS - I know all about the difficult baby part. And the difficult toddler, lol. I wish I had understood the strong importance of being specific and sticking to exactly what you promised your child - some pretty ugly situations could have been avoided. But those were great years to spend with my son. )

One way to look at what is happening is that interventions for children with autism spectrum disorders are intended to help the child function and manage him or herself in the world. For a high functioning young child, adults and peers may be able to understand, accept, and support the child with minimal professional intervention. A small classroom and understanding teacher may be able to help your child in a classroom do beautifully.

Because it is hard for people with ASDs to generalize, what's learned in social skills groups doesn't always transfer to the real world, unless the group activities are integrated into the classroom or someone helps the child apply what is taught in the real world. So for your preschooler, a separate social skills group may be fun and good practice, but won't necessarily make a big difference in the real world, the teachers actions will be what matters. Another way to put it would be that teaching social skills aims to change the child. Right now, your child needs adults to do the adapting (often referred to as adults scaffolding) that will help him develop skills and be accepted by peers.

It's a mistake to try to change your child too much when what he's doing doesn't interfere with growth or safety, as he, like all children, needs to feel accepted and special.

As he gets older and there is less teacher support and greater expectation of independence and leaning on peers, you may need to do more. But it isn't clear what his needs are yet.

Raising a child with any significant difference or disability if you prefer that word is very much of a one day at a time adventure.

Because I have ASD, I tend to analyze what I see separate from good and bad but according to what I see, and I don't know whether this will help you, but perhaps it will. I've noticed if someone has a child with no major identified problem, every little thing is a disaster, and that's accepted and ok. Once a child is labeled with something that can be considered a disability, however, it appears that one is expected to have a calm, positive attitude. So you are probably getting some of that from the doctor. I have felt unsettled for example how my child having no friends is something I am expected to accept, while a neurotypical child losing one of many friends is something I am expected to sympathize with a parent over.

One other thing is because your child has this serious problem but not too badly, you will be expected by the world to be grateful it's not worse. That isn't meant to be harsh, it's simply an observation meant to perhaps make some sense to you, I hope it helps.

This is probably an appropriate course of action. The only concern that I would have is if there is both:

1) a clear potential conflict of interest on the part of the psychologist who gave these recommendations - are they being paid by the school district? If so, there is at least an incentive for them to err on the side of less severe. I worked in Philadelphia schools last year, and I know they are really struggling for money, they have a big incentive to try to avoid providing extra services to children with special needs. That said, they still gave the diagnosis, which suggests that this is not what is happening.

2) Persisting and meaningful deficits that are not being addressed. If this is happening, then the recommendations may have been off, or the psychologist did not anticipate certain things that came up later. If the kid is progressing fine academically, and making friends at school, then all that you need to do at this stage is foster that. There are versions of ABA therapy geared toward the higher end of the spectrum, like Pivotal Response Training (which looks a bit like floor time, but I like the jargon better), but traditional ABA focuses mostly on teaching communication skills, which your kid already excels at.

For children who are only mildly socially impaired, they may function well throughout elementary school, and then start experiencing problems later, like middle school or high school. It's important to monitor both their academic and social development and take steps as you see them falling behind. Sometimes, depending on the kid, it may be appropriate to be proactive, like having several sex-ed talks during middle school, so they can be prepared for when all the other kids start acting crazy, and the social rules suddenly change drastically. Hope that helps.

My daughter is mild.

I do believe that she would still be "OK" if we were doing "nothing." But do I think the things we do for her have improved her life? Yes.

I think the comparison is probably only relevant now. At 3, she was moderately impaired and needed more than "nothing." She did go through 2.5 years of interventions that were about 20 hours per week. ABA/VB, ST, OT, PT. With time spent in a nursery/pre-k setting with a 1:1 to help guide her interactions.

But now, at 8, "mild" is the only way to possibly describe her. And in a sense, we are doing "nothing" if you consider formalized interventions. But we are not really doing "nothing." We (family and school) are aware of her areas of deficits and make accommodations and work with her in these areas in an informal way. She is not on an IEP and she is not on a 504 plan. She is in a mainstream classroom with a teacher who has no specific training for working with kids with autism, but she is--by nature--very motivated to figure out what makes my daughter tick and how to help her be successful at school. But she does meet with the school psychologist weekly, more often if she is having issues. He does not use any particular "treatment or therapy" with her. Instead, he figures out what social cues she is missing and helps her figure out how to deal with it.

At home, looking for teachable moments has come so second nature to me that I don't always realize I am doing it. But I am constantly scanning the environment to look for natural opportunities to help her learn something she is having difficulties with. It is not structured at all, and I don't even think she realizes that we do this.

So, it's not really "nothing" that we are doing. Though from an interventionist's standpoint, I suppose we are doing "nothing."

Even if you do not decide to go the "formal intervention route," which really may be OK, please realize that you probably shouldn't do "nothing." To me, "nothing" would imply that you could treat your son like any other typically wired kid. I think just remembering that he is not typically wired and working on understanding how he is wired and how you can help him function effectively in a world that is not necessarily suited to his particular wiring can be enough.

And if at some point you realize it is not enough, you can always get more structured help.

I have just reread this post and it sounds a bit confusing to me, but I hope you can understand what I am saying and that you do not see me as confusing as your doctor!

InThisTogether,

I think you did a great job of explaining it. I have been at this so long, that I forget how to word things so that people new to the diagnosis understand it, the variances and that doing "nothing" is actually quite a lot of work, in and of itself.

I quoted you because looking at what you wrote, it appears your concerns are fine and gross motor skills and sensory issues. So for a 3 year old, OT and PT make sense. But I think we might be missing a piece about what worries you. Is there a specific intervention that you feel he needs, or is it more the lack of alarm given a diagnosis that sounds very scary? Because one thing to keep in mind is that who and what is diagnosed as autistic has and continues to change dramatically.

IMO you are doing the right thing looking at your child's strengths and weaknesses and planning around them. The only thing missing that many 3 year olds with autism needs is speech, which wouldn't seem relevant to the concerns you are describing at this time. That may change, though, in the future. But you need to help in the present.