Anyone choose to have no diagnosis?

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My son is coming up on four-years-old. He was in First Steps from age 2-3 for the whole gamut of therapies. When it came time to transition to preschool-based therapy, I declined. I felt that nothing was being done that I wasn't already working on. Worse, his therapists were very geared toward "fixing" him, changing things that I didn't see as real problems, etc. During therapy we operated under the assumption that he was autistic, but no formal evaluation was ever done.

Now his pediatrician wants him evaluated and treated at the local autism center. I filled out the paperwork but I just can't bring myself to go down that route again. For starters, he has improved more out of therapy than he ever did in it. I myself am formerly diagnosed, and none of the therapies I endured during childhood were the least bit helpful. Granted, things were very different 20 years ago; but I feel like the underlying message of "you are broken and must be fixed" is still there, at least in all of the state-funded programs we would be stuck in. We plan on homeschooling, so I don't feel like we need to worry about an IEP right now. My only reservation is that everyone else thinks I'm insane for denying my son this crucial "help", and for saying that I don't need a formal diagnosis to know that he is autistic. Sometimes the fact that he is a somewhat milder case makes me feel like some sort of imposter with other autism parents. I almost feel like we won't be let into the autism club without his paper slip. Even my own diagnosis is sometimes questioned, usually because I manage to drive a car or utter a sentence, etc. Yet I do think it's important for us to be involved in the autism community to some extent....

I'm curious, are there other parents here who have chosen to not have their autistic kids formally diagnosed? Or at least who have chosen to just let their kid be, without any interventions and therapies?

I am NT, so my answer may not have great weight. You probably should make these decisions with help from people who know you well.

Diagnosis is one thing, what you do with it is another. Can you use the diagnosis for your own information, and not seek services unless and until your child needs it? For us, my son's dx means I learned a ton (mostly from Wrongplanet) about him and how to support him. I would think a diagnosis would provide useful information to you, whether or not he needs outside help. And the dx might give you the information you need to decide if he does need outside help.

Also, the only "autism community" we are involved with is Wrongplanet, and the only help we receive is from a speech therapist. His issues at home get tough sometimes, but we are doing really well right now.

So I guess I'm saying, make each decision separately. And you don't need to continue therapies which have no or limited value.

So long as your son is academically normal or above-average, you may be fine without the diagnosis. Every state-sanctioned homeschooling program I've heard of, though, requires the kids to make some sort of minimum progress, or they tell you to put the kid in school. At which point you may essentially be forced to go through the diagnostic process. It depends on how strongly people feel about these things locally; they may or may not leave you guys alone.

My son did very well with just school support, and I was advised that pursuing it further might be more harm then help. The school dealt with curtailing problem behaviors, vs "fixing his autism", and he's come a long way in his self-management without feeling broken.

I don't know if this would be applicable to you, but I think that approach is something to look for.

I'd say this: my son didn't get an appropriate diagnosis until age 10, (we were given the label AS in 1st grade, but nobody - including us - believed it) and we struggled mightily until that time - keeping in mind that we had none of your experience with autism. DS was in a regular school and the result of no label was that all of his behaviors were framed in another, more negative way: in short, he was treated very disrespectfully by peers and school staff alike. Once we decided the school didn't know what they were doing and took matters into our own hands, we found that the medical professionals actually DID have interventions that worked, and DS improved radically just from that. We also decided to disclose the diagnosis to him and he decided to disclose to his peers. Suddenly, everyone had an appropriate frame for what was happening to DS, and all our lives improved considerably.

I agree that a label is only as good as what it gets you: there is no point to a label for a label's sake, so, what the label bought us: specific interventions as opposed to nearly useless accommodations. Understanding from his peers and school staff. The threat of legal action under the ADA for his support staff. Understanding for ourselves as a family. An understanding of himself.

You are coming at this from a totally different place, but there are two areas I can see where a diagnosis might benefit you the way it did for us: providing a frame for your child's particular quirks to the outside world, and allowing you access to the legal protections of the ADA (good to have even if you're homeschooling.)

We also had a totally different experience at our local autism center than we did at the school - I'd suggest you go and check it out to see how it feels to you. Tell them your concerns about "fixing" up front - you're the parent (we started our intake with concerns about medication which were respected.) Specialists will be more likely to have interventions that will help, and you are the customer - you can always say what you will and will not do. We had totally missed a couple of aspects of my son's autism that were causing him distress (mainly pragmatics and alexithymia) and they were able to point us in the right direction - it was good to get an outside perspective.

Yes and yes: we choose no DX and everyone said that we were crazy. Same experience, what we tried at school district, and sveral year of various therapies didn't help much. We also tried to find better doctors/therapists privately and again it was not success (according to us). So now we have one therapist one hour a week that is just generally talking to him. He is in private, regular school and it is a struggle but he/we is/are managing.
I do question the decision from time to time (thinking that possibly there is a therapist somewhere that could make it all great and maybe I should have tried more to find that perfect therapist) but ultimately I do not regret it. Our life is better however ultimately we do need to make sure that he succeeds in life in his way.

And yes, both of us are probably on the spectrum so we kind hoped to lead him toward the successful life with weirdness . Good luck to you and your boy.

Edit: Momsparky made me thinking again about therapies and I guess my main conclusion is that the right therapy and therapists make a noticeable improvement immediately. We were mostly told that we should wait 5-10-20 years for results. How am I suppose to know if that particular therapy or approach is good if I am suppose to wait 20 years? It is a great excuse for the doctors/therapists though.

I just want to throw this out there in case it matters. A mental health diagnosis is protected health information (PHI). While you can choose to share that with a school, you do not have to. Your child is protected by a law called HIPAA, which essentially says that health care providers can't share mental health information without your consent. These things can change once it gets within the school, but it is possible to keep it all separate (i.e. get the diagnosis, but keep it a secret from the school). This probably isn't an option if the school is paying for the assessment.

I think the comment that "a label is only as good as what it gets you" is completely right. However, just because you're sure a label won't be able to get you anything useful now does not mean it won't in the future.

Social circumstances will change for your child as he develops, and things that are easy for him now may become more complex as he ages. It is common for kids on the higher end of the spectrum to encounter problems in middle school or high school as social rules start to change. At that point you may decide that additional services are needed. The problems may be so mild that that doesn't even happen, but then your son goes to college, and he needs additional time for tests because of some issues with language processing. That little accommodation may be the difference between success and failure.

If any of those things come up, it may be worthwhile to have the diagnosis on-hand so that you can quickly address the issues. Then again, you could always go that route as the need arises...but doing so in advance will probably give you more options.

My son has a school-use diagnosis (which worked in our district), but no formal medical one (although there are some notes in his medical file that he may be ASD). Since I was getting what I needed in the way of accommodations, I decided to leave it up to him when he got older.

Now that he is 16 it is, apparently, something he ponders a lot and has not made a decision about, in part because he worries that under the new criteria they will tell him he is not ASD, and he says that would really rock his self-perception; he is proud to be "different" and have a name for it.

Pros are services and possibly, in the future, accommodations or understanding at a place of employment.

Cons are potential negative perceptions (including in future custody issues, etc, should any arise; etc) and whether or not the diagnosis can prejudice insurance companies, creating treatment exclusions or higher premiums (assuming the ACA either gets modified or does not hold).

Also, it will be much, much more difficult for my son to receive a diagnosis now that he has been trained to accommodate or mask most of his symptoms. If it were looking like he was not going to be able to support himself or live independently, I think we'd be in a big scramble to get him labeled and qualified for SSI, and I'm not sure if we would succeed. So your child's prospects as an adult are a HUGE factor here. I was ALWAYS confident it was not going to be an issue, but it is not like there ever were or are any guarantees on that.

In my mind, we've gotten the best of both worlds: the accommodations and services my son needed, and the right to decide his own identity as an adult. But, it may be 50 years before I can tell you if it really was the right decision.

Not an easy one at all.

PS - the most useful therapy my son had, that you should consider setting up independently with or without a diagnosis, was speech. Since you are ASD yourself, you may not even be aware of all the speech pragmatics appropriate for your son's age group; I wasn't. In speech therapy, my son learned these. He graduated from and returned to speech several times as the bar on what he was supposed to know got raised, and even learned body language cues as a teen.

In our experience, the therapies that were "right" for DS...felt right. I don't know how to put it. In some cases, it was like a light switch went off, in others, they just made us see things with him differently. There was a trial period in each one before I could really tell - four or five sessions - but I could get a sense of whether or not it was right for DS.

I think the therapists aren't wrong: the real results will show up in the long-term, and you won't really know for years. That being said, now that we're nearly 5 years out, I can see where some of what we did wasted time (and worse, made DS suspicious of therapists and therapies) and some of what we did was critically important to his successes now.

For instance, I've talked here about the Secret Agent Society computer game/therapy sessions - those felt right very quickly. Talk-style therapy or board-game therapy were a disaster - and we could tell because the therapist and DH and I did all the talking and game-playing, where DS would hide under the table or prattle on about a special interest. How Does Your Engine Run OT went pretty well in that DS really did like trying different things to learn about emotional regulation (though if you'd ask him, he'd insist he hated it)

Like I said, DS's emotional state and behavior are always our barometer for how things are going - that includes therapy. He doesn't like therapy of any kind, but the ones he's able to tolerate are clearly also the ones he gets something out of.

My friend's son is HFA and just borders on being an Aspie.

When he was little, he managed school without a diagnosis. The elementary school was really accommodating without a 504 or IEP. His deficits are in pragmatic speech and social skills.

The crap hit the fan in middle school. He was a hormonal 13 year old with all the social skills of a 9 year old. Mix in changing classes 6 times a day, and my friend almost lost her mind because the middle school did NOTHING. After all, no paper trail that her son really needed help. Middle and high school do nothing without a legal gun to their heads where I live.

It took her 3 years (almost all of middle school), to get a formal diagnosis for her son. High school was much better because of the paper trail.

I'd go and see what actually gets diagnosed. It may not even be Autism. If it is Autism, and your son is functioning just fine, that's wonderful. You have it incase things get rough later on.

Just because they offer you therapies, doesn't mean you have to do it.

Good luck!♡

We had to. If we didn't, her behaviors would have been seen very negatively and things would be pretty bad. That said even though she is gifted and high functioning, she is very very autistic. My daughter is a really odd case. My brothers oldest clearly has aspergers, but they refuse to acknowledge any issues choosing instead to scream at him and smack him when he acts in unusual or naive ways. That said he us a really sweet kid. And despite the really piss poor parenting is doing well and is actually really independent. Unfortunately I have to credit his parents with that for ignoring him since age 2 other than to be really hard on him.

Thanks for the responses, everyone. There are a lot of things I hadn't really considered!

It is hard to balance the desire to just let him be and accept all of his quirks--because as an autistic kid, that's what I would have wanted--against the need to push him and get him assistance that may improve his life in the long-term. As another poster mentioned, my main concern is that the diagnosis may have some negative insurance effect down the road, or that as an adult he may just not want it on record that he is autistic.

I am fairly certain that he could not function in school without quite a bit of accommodation; he is obviously very bright, but he is behind in many areas, definitely including speech. That is something else to consider, as I imagine he may want to try school at some point, and I wouldn't want to scramble for a diagnosis. I may go ahead and visit the autism center and see how it goes. Being autistic, I often get pushed around and treated rather poorly in such situations. It is not uncommon for me to lose the ability to speak under stress, and I can come across as unintelligent and overly-emotional when this happens. This is probably part of my reservation in starting the whole process--fear that I will get pushed into doing therapies we don't want or need (it has happened before), and fear that I will not be able to convey enough relevant information on behalf of my son to even get a proper diagnosis! That being said, I can see the potential benefits more clearly now.

Would it help for you to write a lot of your expected responses and expectations down on cards, so that when the situation becomes stressful for you there is a back up plan, ie share the cards? If you want us to brainstorm some questions or statements that could get thrown at you so that you have a place to start, we could do that.

That does seem very frustrating. I sometimes have a hard time standing up for myself too (although I imagine the situation is markedly different). On the other hand, I find that when I am standing up for the well-being of a loved one, I am much more courageous and well spoken. I hope that you will get the same benefit from being your child's advocate. Take it slow, and don't let yourself be rushed, because now it's for your child.

Regarding interventions, there have been many innovations in ABA style therapies since you were a child. Many people have objected to some of the traditional behavioral approaches as dehumanizing and cruel. While some people still practice those purely traditional approaches. others have progressed a great deal. I really like approaches such as Positive Behavior Support, TEACCH, Pivotal Response Training and Verbal Behavior, for this sort of thing.

The stigma is still there, of course, but hopefully it is getting better. Judgmental or insensitive people have also coopted the word "autistic" and are casually using it as an insult when people are socially awkward. Not having the diagnosis may not even protect your child from being called "autistic" in an insulting tone. Having the diagnosis may actually disarm those types of people...they may see it as funny to call a neurotypical peer autistic, when they make a blunder. It takes a special kind of jerk to insult a person with an acknowledged disability, and that sort of behavior often has social costs for the jerk. Carrying that label sets people apart, and I imagine that can be very painful, and if your son can pass, then it certainly may be worth keeping it discreet (or leaving it up to him). If he can't, the diagnosis may serve as a bit of a shield to help excuse some of the unusual behaviors.

Regarding insurance, I've never heard of it having a negative effect. The diagnosis can even help get him free insurance and treatment through medicaid (depending on the severity of his symptoms). I could be wrong here as I don't often work with high functioning adults. Please feel free to chime in if I'm mistaken about this.

I'm glad you're so concerned for your child. It shows that you are a good parent that you are carefully weighing this question, and trying to balance your child's dignity vs his needs. Hopefully the two are not mutually exclusive.

As DW said, do some thinking, writing, and practicing. In particular, come up with a few phrases to say to buy time. Don't make any decisions while under stress, Come home, de-stress, talk things over (possibly at wrongplanet) and then decide.

For your buying time, start positive: "This is good information. Thank you so much! This good food for thought, so I'll think about it and get back to you later."

(I'm usually too blunt, so maybe others have better ideas of phrases to say.)

I like that one.

Brainstorming:

"These are all such important decisions, I don't want to rush them. I will get back to you later."

"I see what you are saying and I will consider it."

One that is not a stall, when you are certain of the point you want to get across:

"I understand your point, but I still think (XXXX) is important, and I want to focus on that right now."