To Diagnose Autism, or Not to Diagnose Autism...

April 11, 2011 1:13 PM

Is it necessary to have my 3-year old son diagnosed for Autism Spectrum Disorder by a neuropsychologist if we're already certain he has high-functioning autism?

Insurance providers love to find any reason to limit or cut off coverage, we all know that. Well I don't want my son handicapped (pardon the pun) by insurance providers all his life by being slapped with the "autistic" label at 3-years old.

After a recent visit with an SLP (on our pediatrician's advice), while not technically able to diagnose, she was pretty certain our son has autism spectrum disorder. He's a fantastic 3-year old, very athletic and energetic, loving to everyone and not shy, incredibly gifted at memorization and recognition, endlessly quotes TV and movies (a symptom of echolalia, which he obviously has), is completely potty-trained, and is very obedient and loves structure and schedules. My wife and I would now like to just focus on educating him, helping him overcome many of the ill effects of this autism, get him meeting weekly with an SLP and a social group, and dive right in on giving him the best chance at a completely normal life (which we are confident is not just a possibility, but a probability for him). It's our belief that he will be high functioning, but can't be absolutely certain. Of course, I'm biased and maybe even a bit jaded and believe he'll the the highest functioning autistic kid ever - but I do believe that conclusion to be pretty objective and based on actual observations.

We've been advised to visit a neuro-psychologist and have him diagnosed. Not only will this cost at the minimum $1000 (which is acceptable and not the issue), but we don't want this on his "permanent medical record." We don't want him (or us as a family) denied coverage at any point in his or our lives. I'm very hesitant to have him diagnosed for these reasons.

Are my fears justifiable? Will being diagnosed become a black mark on his medical record forever, no matter how highly functioning he is? Should we just take the knowledge we have (that we're certain a diagnosis would only confirm) and move on to phase two by ourselves (with the help of a specialist or SLP)? Is there any reason I'm missing that we should have him diagnosed by a neuro-psychologist?

And also, if any of you me-fites have any great links or resources for brand new parents to a mildly autistic child, I'd love to have them!

Thanks in advanced!

posted by Detuned Radio to Health & Fitness (26 answers total)

Best answer: the main reason to get him diagnosed is to get him access to services. Depending on where you live, you may be able to get early education programs, speech and language and occupational therapy at public expense. It can also help set you up to get special accommodations from the school system when he gets older. Many believe that aggressive intervention during the preschool years can give the child an ability to interact with us "neurotypicals" that will make his life much easier in the decades to come. However, all that help is expensive - often prohibitively expensive - without the benefit of public services. It is certainly worth finding out what the positive benefits of a diagnosis might be in your community.
posted by metahawk at 1:26 PM on April 11, 2011 [6 favorites]

Best answer: I have a sister with two autistic kids, and from what little I know of their process, being diagnosed is absolutely essential if you ever want to get state services like occupational/speech therapy, schooling, or things like that.

Knowing where on the autism spectrum your child is will also help the doctors you do see plan a course of action for helping your child. You, as a non-doctor (I assume), have no basis for making the "where on the spectrum is my kid" judgment, therefore wouldn't really know where to start in getting him help. Anybody you see for help will want to know what the doctors say, which helps them get started.
posted by pdb at 1:27 PM on April 11, 2011

Best answer: I wouldn't get him diagnosed until you NEED the diagnosis. Presumably you will at some point. An example of NEEDING a diagnosis is when he enters school, and has a problem with some aspect of the school environment, and needs additional support and an IEP or GIEP. Then, getting him diagnosed might help force an issue with the school - if the school doesn't agree with the help you think he needs to succeed in school - then you can say "Oh but he does" and wave the diagnosis in their faces. I am not an expert, just a parent...
posted by molasses at 1:28 PM on April 11, 2011

I'm not sure why you think he's autistic. It sounds like he might not be. Just go see a neuro-psychologist and get the correct diagnosis.
posted by empath at 1:28 PM on April 11, 2011 [5 favorites]

Response by poster: Thank you for all the quick input so far!

I suppose I should also add that I had been planning on home schooling our son (at least through elementary school) up until this whole "autism" thing fell in our laps. But now, I'm actually a little more eager to home school him. Based on my previous research, I assume there are autism-focused curricula out there that deal specifically with autistic children, so that shouldn't be a problem. But I don't anticipate needing too much Early Intervention (EI) programs that are subsidized by the federal government or state (in our case, Utah).

And if/when I finally decide that he's ready to move on from home schooling, it will most likely be into a private school, so again, I have no problem paying out of pocket for any services.

The idea of getting him diagnosed only if he would ever need it sounds appealing. And then that would even jibe with empath's suspicion that he might not have autistic spectrum.

But I would love to know if anyone knows whether or not a positive diagnosis would be detrimental to his chances of being "insurable" in the future.

Thanks!
posted by Detuned Radio at 1:39 PM on April 11, 2011

I don't think an autism diagnosis has had any impact on the insurability of my nephews. They're on my sister's family insurance plan right now. They are only 7 and 5 years old, so I can't speak to what will happen when they become adults, but as kids I don't think you have anything to worry about.

/not an insurance expert
posted by pdb at 1:44 PM on April 11, 2011

As long as you are on a group plan (as through an employer), you will never have any issues with insurance coverage.
posted by something something at 1:45 PM on April 11, 2011

Best answer: Our oldest son is on the autism spectrum, and the diagnosis has been a boon. Having a diagnosis on the record opens doors and gives you access to services that you mightn ot otherwise get. Also, insurers are more likely to approve payments for specifically-diagnosed issues rather than nebulous descriptions of symptoms.

Our doctors have told us all along the way that having the diagnosis generally improves things insofar as insurance is concerned.
posted by DWRoelands at 1:46 PM on April 11, 2011

The idea of getting him diagnosed only if he would ever need it sounds appealing. And then that would even jibe with empath's suspicion that he might not have autistic spectrum.

All due respect to empath and yourself, but please don't take the internet's word over a doctor's. Your child might or might not be on the autism spectrum - that's not something you can figure out on your own.
posted by pdb at 1:50 PM on April 11, 2011 [2 favorites]

Best answer: I'm not an expert, but unless they repeal the part of the health care law that has to do with no pre-existing condition exclusions for children, your son should always be insurable during childhood.
If it were my son, I would get him diagnosed by the professional most equipped to do so before treating him or giving him special education.
posted by elpea at 1:50 PM on April 11, 2011

And empath said I'm not sure why you think he's autistic. It sounds like he might not be. Just go see a neuro-psychologist and get the correct diagnosis. Meaning, encouraging that your child be seen by a neuropsychologist, not encouraging you to assume he's not autistic.
posted by elpea at 1:52 PM on April 11, 2011 [1 favorite]

I think that even with homeschooling, having a diagnosis would be useful so you can take advantage to any programs your local school district runs. Having the intervention of medical professionals and educators would be beneficial for your child, as well. Homeschooling your child without the input of anybody who is actually trained to handle autism strikes me as a bit worrisome.
posted by pecknpah at 1:52 PM on April 11, 2011 [2 favorites]

Best answer: What these guys already said, but to add, if he doesn't have symptoms so severe that it creates a problem, then he's not on the spectrum, diagnosis or not.

Having said that, we were sure about one of ours, and then got the diagnosis, and so far I am not aware of any good having a diagnosis is. He already was getting speech/occupational etc. So far no practical help has been made aware to us, nothing that will make parenting him one iota easier. They directed us to books we've already read and websites we've already seen. I don't know what in the world having a diagnosis is good for.
posted by rahnefan at 1:58 PM on April 11, 2011

Call a local Head Start center. You don't have to say anything about planning to home school. They, if I remember correctly, have a mandate to help identify disabilities in pre-school children.
posted by mareli at 2:10 PM on April 11, 2011

Response by poster: I think a great solution that we fortuitously stumbled upon is getting him diagnosed by a private-practicing neuropsychologist. We found a place called Autism Journeys about 25 miles South of us that can facilitate a lot of the needs our son will have. They can also diagnose him. It seems like a fantastic option for us, and I'm glad to have heard many of your guys's concerns regarding the need to have him professionally diagnosed and not just going off of my gut feeling.
posted by Detuned Radio at 2:13 PM on April 11, 2011

Best answer: Detuned Radio: " He's a fantastic 3-year old, very athletic and energetic, loving to everyone and not shy, incredibly gifted at memorization and recognition, endlessly quotes TV and movies (a symptom of echolalia, which he obviously has), is completely potty-trained, and is very obedient and loves structure and schedules. My wife and I would now like to just focus on educating him, helping him overcome many of the ill effects of this autism, get him meeting weekly with an SLP and a social group, and dive right in on giving him the best chance at a completely normal life (which we are confident is not just a possibility, but a probability for him). "

This described our son exactly at age 3 when he was first diagnosed on the spectrum (he's 6 now). We did get an official diagnosis from a developmental pediatrician because we wanted to get him involved with the public schools early intervention program. The diagnosis helped determine the kind of therapy he received (Applied Behavior Analysis, Occupational, Physical, Speech etc.). Also, as we've added therapy outside of the school system, the official diagnosis makes it easier to get insurance to help pay for it.

empath: "I'm not sure why you think he's autistic. It sounds like he might not be."

As I mention above, I totally disagree with this because you've described my son and he's certainly on the spectrum. It's just that the most significant delay we've encountered didn't become obvious until my son hit kindergarten. Then, while his speech and language skills were still improving slowly but surely, his peers skills were taking off...and I mean like into the stratosphere by comparison. This is one of the reasons we were encouraged by the doctors and therapists to place him in a school setting with neuro-typical peers. He's basically been dealing socially with kids all day long since he was three and I have to believe that it's helped him.

Anyway, I don't think getting an "official" diagnosis can hurt and it might open up some opportunities that you don't know about. I think your commitment and positive attitude are the most important parts of the equation. Don't hesitate to memail me if you have any questions...it's a learning process for me too and I've met some wonderful people on the way.

As a final note, my son is in a regular classroom setting with his peers and doing very well.
posted by victoriab at 2:35 PM on April 11, 2011

I would be a little wary of having a private practice that specializes in providing autism services also diagnose your son. Not to say they would be so unethical as to diagnose your son as autistic just to get your business on the other services, but their interests certainly are aligned that way.
posted by kindall at 2:37 PM on April 11, 2011 [8 favorites]

Count me in as another vote for contacting someone with your local public school system's early childhood intervention program. I know someone in the field, and all the current research says that when it comes to getting your kid services, the earlier, the better -- and a lot of the services may be publicly funded.
posted by pie ninja at 2:55 PM on April 11, 2011

As a child, I was diagnosed with ADHD along with a pretty severe speech impediment. I received services from 6th - 12th grade for the speech impediment through the Madison Metropolitan School District.

Since then, as an adult, this has never come up in any way, shape, or form in either acquiring health insurance, or medical care for other issues. I've even had private insurance, and again, none of this came up at all. It'd be in the kid's best interest to get services if they indeed need them, as soon as feasible.
posted by spinifex23 at 3:08 PM on April 11, 2011

What these guys already said, but to add, if he doesn't have symptoms so severe that it creates a problem, then he's not on the spectrum, diagnosis or not.

That's pretty much the criteria for most disorders- it starts with "something is the matter and it is affecting normal life/development". It's in the name: dis-order. There is nothing wrong if there is nothing wrong.

Speaking for the internet, I'm pretty sure I've never met a 3-5 year old that didn't do some form of that. Isn't that just one of the development stages? I would consider it abnormal if a child didn't do something like this.

But, yes, you should get your son examined by a properly credentialed professional. Forgive my skepticism of a "doctor" who works for some place called $Disorder Journeys whose sales pitch involves the "positive" of not having to deal with insurance companies. Smells fishy.

It seems kind of like you WANT to "get a diagnosis". Sounds very much like a college student trying to figure out how to get Adderall. I will not venture a guess as to why, but you should consider why this is important to you.

Another answer: no harm will come to him if a diagnosis does go on his record. Best case, he gets treatment that he needs. Worst case, another doctor in the future looks at the case file and says "this kid doesn't have autism, I don't know why this is in here". Even insurance companies under the old system didn't count something as pre-existing unless there were actually claims against the disease/disorder for a certain time period like a year or two.
posted by gjc at 6:03 PM on April 11, 2011 [3 favorites]

Best answer: I work on an autism diagnostic team and help families deal with this question every day. Well, every day I am at work :)

First of all - I have never heard of an Autism diagnosis causing someone to have any difficulty with insurance companies. In fact, having that diagnosis opens doors to rehabilitative services that might otherwise be closed, if for instance his difficulties are instead labelled "language disorder" or "developmental delay".

I also want to each gjc's reservations about the diagnostic facility you are considering. Instead, here is a list of diagnostic resources for the state of Utah from the organization Autism Speaks:
http://www.autismspeaks.org/community/fsdb/category.php?sid=52&cid=110

In fact, their whole site is a wealth of resources on a variety of topics and I would recommend taking some time to explore it in depth.

I do want to make one other comment which is that if you do decide to homeschool, please work with your school district in order to figure out what kinds of intervention services will still be available to your child. Every little bit helps.

Good luck to your family.
posted by lilnublet at 6:52 PM on April 11, 2011 [2 favorites]

each = echo (sorry)
posted by lilnublet at 6:53 PM on April 11, 2011

Best answer: There are many neuropsychologists who can evaluate him who also do not come with the "package deal" of therapies. I'm a therapist and have worked with many kids on the spectrum, and my advice to you would be to go to get a private assessment, with a neuropsychologist not affiliated with an autism center, and then take advantage of whatever excellent services might then be available to you based on the diagnosis your kiddo receives.

Also, like lilnublet mentions, even if you plan to homeschool, there are still a lot of benefits he could get from floortime therapy, one-on-one occupational skills therapy, or social skills groups, and the school district might still be in a position to fund some of that because they are responsible for each kid who lives in the district, so I encourage you not to discount that option.
posted by so_gracefully at 9:24 PM on April 11, 2011 [2 favorites]

Please read gjc's comment above. It appears to me that you've already diagnosed your son with ASD, disregarding all the perfectly normal things you listed about him. He's three years old, for Pete's sake! An ASD diagnosis (by a developmental pediatrician) would be better adjudged three or four years out.
posted by kuanes at 5:36 AM on April 12, 2011

All due respect to empath and yourself, but please don't take the internet's word over a doctor's.

I'm pretty sure I suggested she go to a doctor and not self-diagnose.
posted by empath at 6:21 AM on April 12, 2011

Response by poster: I might be painting the picture a little too rosy. I mean, he is all of those wonderful things I described above, but he does have some very pointed and undeniable autistic tendencies and characteristics. We had both a developmental pediatrician and an SLP test him and they both concluded that he's definitely on the spectrum somewhere. It was sad and fascinating observing the tests - as he interacted with the SLP, you could see the ASD tendencies just rise to the surface. I had always accepted them as part of his nature or as being a little slow to develop in some areas, but it was eye opening to see them for what they are.

If my son had a broken bone, a disease, or some other physical malady, I wouldn't hesitate to get him diagnosed and into a doctor. But this isn't the case. It's a psychologist performing a very subjective and unstandardized test. I'm leaning towards having it done for the other doors it might open in the future, but not because I feel the diagnosis from a developmental pediatrician and an SLP is not sufficient. (My wife majored in psychology and for a long time that was her career path, so we have a great respect for the profession and that field of study.)

@gjc and lilnublet - while I have no hesitancies about this facility (it's been very thoroughly and independently vetted, and while I know a certain amount of cynicism is healthy, I think it can usually be very damning), thank you so much for your input. It's good to hear that my main concern - if he or we might have difficulty with insurance companies and being insured in the future - may not be a valid concern after all. I like so_gracefully's suggestion of getting a private assessment with a neuropsychologist not affiliated with an autism center, but then take advantage of whatever services then are available, whether public or private. And for the record, I am in no way self-diagnosing my child here, this has all come from concerns from his pediatrician and confirmed by a developmental pediatrician and an SLP.

@lilnublet, I think I'll be using that link to find a neuropsychologist that can see my son within the next month, so thank you. My initial frustration was getting a "there's a 4-6 month waiting list" reply from everyone I was contacting. This is a great resource. I'll also seek out some private practitioners and firms.
posted by Detuned Radio at 3:22 PM on April 12, 2011