Why seek a diagnosis? Is it not important for a child?!

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My daughter is nearly four years old. I am a bit confused because my son, her 2 year old brother, was just referred to an Autism clinic (presumably for screening). Our daughter was so much more difficult than he is, and I am a bit upset that we continually asked about whether she should be tested and we were told "wait and see."

The reason my son was referred, I believe, is because he had a recent stay at a children's hospital when diagnosed with type 1 diabetes. A lot of screenings were done, and by specialists. My daughter's pediatrician barely paid attention to anything, but he accepted medicaid, so that's where we went.

My son's symptoms -- babbling only at age 2, minimal consonant sounds. Does not recognize name, does not verbalize to indicate wants or gain parental attention. Pulls me to the door, or to the kitchen, if he wants to leave or eat. Maintains eye contact. Refuses to eat food except a few crackers, has always gagged and shuddered at puree/wet foods, literally never ate baby food, yogurt, ice cream. When he does eat, most foods are taken out of the mouth and rubbed all over face and surroundings. Minimal joint attention. Loves cuddles. Obsessed with string twirling/chewing. Does not point or look in the direction of a pointing finger.

My daughter's symptoms at his age were similar except..... she did become trained to knock rather than point (she would knock on the tub for a bath, she would knock on the fridge for a snack) and her self-harm tantrums, including running full speed into walls. So by my estimation, her symptoms were worse than his, and all our pediatrician did was say wait and see. She received ECI and they said "doesn't matter if she's diagnosed, she gets the same services either way." and "She is doing so well, she'll grow out of this in time for school." So we didn't push it. We felt that would be rocking the boat.

At age four, she is now sensitive to tone of voice, becoming immediately hostile and needing physical removal of a situation/behavior (redirection is very very difficult) if we verbally correct her. Physical correction worsens a situation as she becomes combative in return. Becomes hostile at laughter/song. She has a receptive and expressive language delay of over a year and a half. She loves other children but has no friends because she can't verbally communicate with them... usually she plays with two year olds who can still communicate more effectively than her. Lots of eye contact, enjoys cuddles. Refuses to potty train, terrified of flushing toilets, high water pressure, blow dryers. Repeats phrases over and over and demands that adults around her do not talk or repeat the phrases back to her. Incessant need to chew things that are not food... carpet, wood, blinds, string. She still uses a pacifier to keep these things out of her mouth. Hates chewies. Loves playing with baby dolls/pretending to cook. Learned to count at age 2, did not learn her name or say "mama/daddy" until age 3.

The big things that are usually asked of us when I express concerns: Does she look you in the eye? Does she like to be touched? Yes? Okay. Give it time.

She does GREAT in school. She attends for only three hours a day, and loves being around other children. Their behavior sets a tone for her, and she wants to do what they do. She is more advanced than the kids a year older than her regarding knowing her letters, their sounds, the planets and counting. We saw great progress at reducing that word repetition and potty training while she was in school... now she's back in diapers and actually BABBLING sometimes at home since getting out for the summer in June. I am distraught.

My parents are actively discouraging me from a diagnosis because they don't want her to be "labeled." And she is "fine." Yet my mother lies to other mothers on the playground, telling them she is a younger age, so I know she is denying this. I feel like my daughter's teachers and therapists are glossing over these issues because she's improving. Do I need to seek a diagnosis of some kind other than "speech delay"? Am I going to harm her for life if I do?

Why does anybody get a diagnosis if they are screened and the child gets services based on apparent need rather than qualifying based on a diagnosis? I'm missing something here.

I am torn between feeling like I have failed my daughter, because my son with fewer problems has been "flagged" and feeling like I am making a mountain out of a molehill because my daughter can improve. I am angry because I feel like professionals around me should be providing more guidance in how to handle this but maybe it is unethical for them to steer me in any direction. I wish I had a manual for this.

I really think it is much harder for a girl to get diagnosed than a boy. I am assuming your children share a pediatrician, so I would ask the doc point blank what makes differentiates your son's need from your daughter's. I would really be looking for specific answers. If there aren't any, then that would make me think they are looking at correlation statistics as a guide. Unfortunately, this has a circular nature to it because the more girls are under-diagnosed, the more likely it is that future girls' symptoms will also be dismissed as nothing.

In addition, girls with autism present differently than boys do, and appear to have greater social skills. Of course NT girls tend to have more social skills than boys at a given age during childhood, so the bar should be increased, but in practice it is not.

If you could find a developmental pediatrician in your area, he/she may give your daughter a more definitive diagnosis. They have more education with childrens' behaviors than regular pediatricians. I was fortunate to find my son's dr. who recommended Parents As Teachers, the First Steps programs, etc. Also with her diagnosis, I was able to get an IEP with scheduled time for an OT and a SLP to work with my son at our school district, which I might add was the difference between night and day. You may have already tried this, but if not, I hope this may help you. Best wishes.

Absolutely CLASSIC sexism in medicine. Someone should write a paper on your family or something.

Bring in the supports for the boy. Wait and see for the girl.

Since we are not going to solve the problem of sexism from doctors today, you are going to have to get very assertive to get her needs met. One tool is to write down the criteria in the DSM (or the ICD-10, if that's what's used in your country) on one side of a page and on the other side of the page, list all of the ways in which your daughter is meeting that criteria. In short, go in prepared with "doctor speak." Don't allow them to judge by looking at her while she's in the office.

I'm just going to reiterate what others here have already said: it's because she's a girl. I wish I had more to add, but others have touched on the subject already. Autism can manifest differently in females, and, sadly, researchers have only just started to learn what that looks like.

A bit of personal history: I'm 32, and although I'm not yet diagnosed, I'm pretty confident that I am autistic. I came to this conclusion on my own 2 years ago after reading blogs and forum posts by women with Asperger's and saying to myself 'I could have written this.' I've done a lot of research since then that has, for me at least, confirmed it.

When I first learned about Asperger's back when I was in college (over a decade ago), the only descriptions I found of people who had it were of boys and men and I couldn't relate. A couple years later, I tried seeing therapists to figure out what was wrong with me, and, according to both of them, not a whole lot. In retrospect, I'm partly to blame, because there was a lot I didn't share about my own inner workings because I assumed they were normal. Though, to be fair, neither of these professionals thought to ask. Anyway, after the second attempt, I remember driving home and having to pull over, crying, think no one could help me. Perhaps I shouldn't have given up after only two, but it had been so, so difficult for me to even make that first call, much less the second. Over the next decade my struggles only got worse. I'm not yet comfortable sharing those experiences, even anonymously over an online forum, but I often wonder if at least some of those struggles, that pain, could have been avoided if I knew why I was the way I was. If I had some kind of support, some help in learning how to cope.

What would my life be like now? Would I be flourishing now, instead of only just learning how to 'get by?'

The point of my sharing this story - please don't stop fighting for your daughter. It sounds from what you've written that she's got amazing potential, and it would be really unfortunate for her to not get the help she needs to reach it.

Here's an article posted by another forum-user in the women's issues section I found really interesting. I think you might get some insight from it as well:

http://www.scientificamerican.com/article/autism-it-s-different-in-girls/

I also think that doctors still don't realize that girls can have autism as well, so they just focus on the boys as in the case with your family. I don't know if I would call that sexism since it wasn't until the late 1990's at the earliest that autism itself was recognized as a spectrum as only nonverbal boys were diagnosed with autism before then. Even high functioning males were rarely diagnosed, or they were probably misdiagnosed with ADHD or other disorder when they were actually autistic.

I'm a female who wasn't diagnosed with Asperger's or high functioning ASD as it's called now until I was almost 30, but it was something I had since I was born. Even as late as 1994, a therapist said that "if there were such a thing as a little bit autistic, that would fit." Unfortunately, girls and women fall through the cracks because people still haven't realized that autism doesn't just affect males.