Defending the diagnosis

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My nearly 3-year-old daughter was very recently diagnosed with an ASD, specifically high-functioning autistic disorder. That's how it was explained to me. I understand there's a spectrum, DSM V changes things, not every clinician does it the same. We've been in early intervention forever, but will be new to ASD and its specific treatments and whatever all else. Before I even have a moment to learn about our insurance, RDI vs ABA, and the IEP process, I'm finding that the first obstacle is defending the diagnosis. I'm not 100% convinced of it myself (I don't think I mean that in a denial way, just I don't quite get the diagnostic categories), but everyone questions me. It's like ... I have twins. When I was pregnant, if someone said, "no, that can't be twins!" I know they'd mean that as a compliment, but it's weird phrasing and I could prove that it was indeed twins with a sonogram or by birthing two kids. When everyone around me is saying it doesn't look like autism and I agree, based on my limited experience, I don't have some way of quieting the crowd. I can only imagine this is a common situation for parents, so I'd love some feedback on what to say. I just need to quiet the crowd so I have space to deal with the IEP and begin to understand what her needs are so that I can help my daughter as she needs it.

I would say the best approach is to not obsess with defending the diagnosis to yourself or others.
Focus on your daughter's specific issues and think carefully about how you and others should help her develop well.
Do a lot of research, but only listen to rational arguments on what works and what doesn't.
Don't get tricked into the latest unproven methods that cost lots of money.
Make a big deal out of education, making sure that you daughter gets the education that she deserves when she starts school.
Remember that you can do as much as therapists or teachers to help you daughter develop social abilities, but her social cognition will not become normal ever, and it doesn't have to for her to have a happy life in which she can do what she wants.
If you try a therapy and find that it doesn't show any progress over a year at most, ditch it, as your daughter probably doesn't think in a way targeted by that therapy, so it will probably not work for her.

Last edited by btbnnyr on 08 Oct 2014, 1:54 pm, edited 1 time in total.

My son was diagnosed with DSM IV, so I don't have a good handle on the severity categories. I don't even know where I would put my son, so I won't be much help in parsing the severity issue.

First, I am going to ask to whom you are attempting to defend the diagnosis? Friends? Family? Therapists? A lot of how I answer would depend on the category of person.

For friends and family it may be meant to be nice; it may be that they are trying to help make sure there was not a misdiagnosis. It may be they are struggling with accepting it, or don't believe in high-functioning autism as a legitimate diagnosis.

As far as your doubts go, I would ask what the confusing parts are. Are there parts of the report that don't make sense? Many autistic kids are not as severe in all aspects. Some kids have a lot of splinter skills and uneven results. That is where we are and so I don't even know how my son could be given an overall severity level as it really would not be useful to us, I don't think. Knowing the specific strengths and weaknesses tend to be the most helpful.

I do remember that. And while the other posts make really good points, these are the sorts of things I used to say, generally to family, and the curious (teachers and the school made the tentative diagnosis, so I never had any push back there):

"Autism is a spectrum, and the medical profession's understanding of it has been increasing by leaps and bounds. You will still hear a lot of misconceptions but I've done my research and I am absolutely convinced the diagnosis is correct." Or parts there-of, depending on the exact questioning.

If they had specific questions, I just answered them. Assuming we were in a time and place I could do so; if not, a simple, "I could spend hours talking about this, but right now, I just can't."

To our doctor:

"There is a lot you don't have the opportunity to see; I do think this is the right label." They believed me.

High-functioning, in DS's case, means people must spend some time with him (interacting with him, not just in the same room) to realize that he's not quite like other kids. So, when someone acts surprised to learn he's autistic, I just tell them to wait until they've been around him a bit longer.

Thank you. I appreciate these responses I've read so far.

I agree that the focus needs to be on sorting out what her needs are. I think I am just feeling so caught off guard by the comments like, "What? That doesn't look like autism!" And, "diagnosed based on what?" "She's just shy." "That's like all two-year-olds." The comments have come from teachers and therapists. I guess what I'm thinking is, if I can get these people to hear me and move on from these doubtful thoughts, they'll be more likely to get on board with helping her. It doesn't help that I share their their doubts. Even during the assessment I repeatedly said things like, "well, yes, she does do that with her hands often, but it isn't flapping, surely that isn't a symptom!" And on her report, I felt like many of the marked categories are true of all toddlers. I do appreciate the reminder to move on if a therapy/therapist isn't helping.

That's another good point that high-functioning autism might not be seen as a legitimate diagnosis. I'll admit I need some convincing that it is. I feel bad that it even hints at classic autism since I recognize that I can't possibly understand all that families are dealing with when a child is more severely affected. Relatively speaking, my daughter's difficulties are nothing.

Thank you for sharing some specific words. I think something along the lines of, "I think this is the right label, there's a lot you haven't has the opportunity to see yet" works for me.

I am going to suggest you continue to do your research, however, since it sounds like you aren't 100% on-board yourself. You will find in all this process that your instincts are key, so never ignore them.

I was shocked the first time I heard the ASD level for my son, who was highly interested in being social and quite engaging with adults. But it didn't take that much reading for me to realize that it 100% was my son. Other parents, however, may end up concluding differently, and no one knows our children better than we do.

If by teachers, you mean pre-k teachers, I would not expect them to have a clue about autism. Even before my son had autism, I knew he would never make it in a pre-k. Many of us in that situation do not attempt to send our children to private pre-k. A kid who is functional enough to stay under their radar, is going to be perceived as not having anything unusual going on. There are also a ton of misconceptions and stereotypes and if your child does not fit them, then people assume you are way off. If your kid is "smart," if your kid doesn't bang her head on things, etc.

As to how to get buy-in and help from professional people who don't believe you here is what I would do. If it is a therapist, I would say choose someone else to work with your child, b/c the person is not looking at your child with the right lens to help her. As for a teacher, in a placement that is otherwise OK, I would stick with something like what DW_a_Mom suggested and maybe add that you would appreciate an eye being looked out for her social interactions or whatever you are concerned about.

As far as your discomfort with a high functioning kid getting a label they somehow are not entitled to, because it is not that bad, I will say a few things. Accepting a label is not taking anything away or diminishing the challenges that other kids have with more severe issues. Milder doesn't mean less authentic or illegitimate. If your daughter had enough issues that inspired you to get her evaluated, that means she probably does need help.

You can also get this from special ed teachers who mostly teach more severely affected kids. I've had two friends whose younger children are in the moderate range -- not completely nonverbal and in their own world, but more severe than their Aspie older child -- who said the teachers always gave such glowing reports about how advanced the kids were because their frame of reference was the severely affected. There was no way the kids could have coped with a non-special ed placement at that point, but the teachers couldn't see what needed working on because the kids were so far ahead of the other kids in the room.

Yes, this is where we are now as we enter the final weeks of early intervention. I'm still completely at a loss for how to handle the meltdowns, but they are almost all at home. We were nearly graduated until more social skills entered the developmental tests at age two. The parents of typical kids are also giving me the, "oh my kid does that" speech, which always involves that one tantrum their kid threw a month ago... It's hard to describe that there's a difference between what's normal and what's not, especially when both behaviors overlap.

Yes, this is true. She needs help, as do other high-functioning kids. It's the terminology that I'm uncomfortable and unfamiliar with. I don't want to dismiss our needs. I also want to be sensitive to diminishing the needs of more severely-affected individuals and families. For the moment, I can just be aware of my discomfort and come back to this point to learn to better approach my language surrounding autism until I've taken care of my family's immediate therapy and IEP needs.

I always seem to say the wrong thing. But I think I'd maybe want to smile and say something nice about how wonderful my child is and thank the person for enjoying her. I'd gain nothing from arguing is all. So I feel I might as well try to agree with the part I like!

And although some may and do feel diminished by people with high functioning autism being given an ASD label, it is your job to advocate for your child, with sensitivity to others, but without reservation.

A label and services now may make a huge difference in her happiness and functioning in the long term. I don't see any reason for you to defend a diagnosis you did not make. Unless you in your heart see her as typical, it's a mistake to look at the ways she seems like a normal healthy little girl as reason to question a label instead of the joyful things they are.

This is true, also. When dealing with parents that you don't need to persuade, I think this works well, too. With teachers you may need to persuade them to give your child some extra help. What Waterfalls suggests is a very good idea for kids' parents or extended family for whom you don't feel an emotional need to be in your corner with all this. Nod and smile, accept the positive statement and be done or whatever.

You know, I know they don't use this diagnosis anymore, but when talking to regular people, you could say Asperger's instead of autism, if that makes you more comfortable. When my son was first diagnosed I was sure my son had AS and not AU b/c of the way the definition was structured and did not understand them giving him HFA as more of a severity indicator than a precise definition. I am persnickety that way, so I generally said AS at that time. I did this knowing they were about to change it anyway and it was going to be merged with AU, anyway, but it made me feel better at the time.

So, I don't think it would hurt anything to say AS if that makes you more comfortable.

I do want you to be aware that in addition to people being concerned about moderate people co-opting a label they don't deserve there is another issue where some might interpret it as not wanting your kid lumped in with LFA kids, even if that is not what you mean. I would say use whatever makes you more comfortable. A lot of people use HFA and AS interchangeably, and I don't think there is harm in that.

After awhile the labels really do become less important, and you end up just focusing on the specific strengths and weaknesses b/c aside from accessing services that is the main thing.

Ditto, and I will also add that our denial of the diagnosis set us back quite a bit. We had the stereotype of AS in our mind when we saw the diagnosis, which my son didn't fit at all. (I'm not blaming myself too much for the denial: the school gave us no explanation at all, just pushed papers with a label on it and told us we qualified for a 504)

What I often say to people who deny my son's autism: "He's really good at hiding it, and that's part of the problem - people overestimate him all the time." (Which is accurate.) Since you aren't sure, you could say "I am looking into it; my primary concern is meeting my daughter's needs. We will judge whether the diagnosis fits by that criterion."

My son is also very, very social - in fact, the paperwork with his first diagnosis of autism on it listed him as "popular." It never occurred to me that he could have friends and a social life and still have autism...until it all fell apart when he was 9 or so.

Some of the problems we didn't see (but which, in retrospect we'd have seen very early if we had known what to look for:) He needed instructions to learn to crawl, climb, greet people, clap, etc. He was VERY quick at learning when instructed, so he didn't present delays in any of those things, and it never occurred to me that having to teach him was unusual.

He speaks through "scripting," which, while in obvious cases means copying TV, in my son's case meant remembering phrases and guessing when to parrot them back - you have to be very careful to catch this: he speaks pretty normally among peers, but not to other audiences (you don't say "s'up?" to an elected official, for instance.) In other words, he communicates more like a foreigner with a phrasebook than like someone having a conversation - which is a HUGE deficit both in speaking and understanding if you think about it, even though it "looks normal."

I don't know how your daughter presents, but these were two specific ways in which my son was compensating enough for his deficit that caused us to miss it.

There's a sticky of recommended reading at the top of this page: it's a great place to start research. The Complete Guide to Asperger's Syndrome was an eye-opener for us (I suddenly realized that not only did my son fit the profile, so did I) and I would bet Aspergirls would also be helpful for you (which I haven't read but has been recommended often on this forum)

Hi! I will have to say that it is great your daughter was diagnosed so young. My daughter was not diagnosed until age 18 and I think it would have really helped her and us if we had known this as a young child. Looking back there were lots of signs, but nobody, including us, put them together until recently.

She was diagnosed with developmental encephalopathy at 6 and learning disabilities. And all family and friends would always comment that she was "just fine"....I know how hard that is. It is really hard to hear that over and over and they would even say it with her having some type of diagnosis! I guess a lot of people like to be in denial. I'm not sure. She's also extremely verbal, which made a lot of people not see what we saw.
I blamed myself at times of her difficulties socially through the years and it was hard. And I knew I was a good parent and I worked really hard with her. The best I could.

So a least you can repeat to family/teachers that this is the diagnosis and just maybe that's why she's not doing something, etc...instead of blaming yourself and know that these therapists/teachers etc. can hopefully be of help to her and really, unless they are recommending hours and hours of therapy...maybe the extra support can't hurt!
And by the way, my daughter is in college now, taking a light load, but doing pretty well overall.