Posted in Advocacy, Autistic Identity, Identity

From the Archives: To Diagnose or Not To Diagnose

I was talking to a work friend about my son, when my husband and I were finally were coming to terms with the fact that my son might be Autistic.

She wrote me that she had heard from one of her Autistic son’s therapists that you just know.  You know when the other mothers have all moved on to worry about whether their kids are eating a healthy diet, and you’re stuck back on “will he talk?” or are just happy that he’s eating anything.  You know when the other parents have birthday parties and can drop their kids off without worry, and you’re frightened that if you don’t hover something will happen.  You know when your child is in a pre-school or Kindergarten class, and he or she has been reading since at least the age of 2 or 3 and is forced to learn “colors” and “the alphabet,” yet his or her favorite words to read are long ones, dealing with the mythology behind the current superhero, rock, or dinosaur interest.

There are many different things that could be signs, but you know when you’re not worried about the “right” things, the things the other parents seem to be concerned about.

But some of us don’t know until late.  You know in middle school, when your daughter doesn’t have any friends and can’t seem to navigate the social structures.  You know when she gets quieter, and withdraws more and more into her books and/or special interests.

But you’ll know.

Labels: They Are NOT “Just for Soup Cans”

Once you know (or think you do), the next step may or may not be diagnosis.  Let’s talk about “diagnosis fear” first before we talk about whether to choose to diagnose.

A lot of people are afraid of the diagnosis because labels “don’t mean anything.”  Ignorant people will attack the label (Side note: check out this video about things ignorant people say; peruse the comments for Autistics chiming in about the things they heard, too, and how people react):

Sometimes it’s understandable, as in the case of my aunt who had a Developmentally Disabled sister who she treated like, well, her sister.  She never mentioned that she was delayed, even though everyone knew.  In her era, you didn’t talk about differences that were hard to see (and rarely talked about those you could).  If you talked about it, you inevitably had the conversation about why you didn’t institutionalize the person.  Her family kept her sister at home, and she’d probably grown tired of rationalizing that choice to an ignorant public.

Today is different, though.  The modern Disability Rights movement has shifted what we believe about ourselves and also gives us the right to live at home if we want to, or a special school if we prefer it.

Disability, like race or gender, is an integral part of our identities.  When we are Disabled (even with a hidden disability), we see the world through different eyes than those of the mainstream population.  As I’ve written earlier, though, only society can disable a person.  That’s why what is “disabling” varies based on time, place, and circumstances.

So, the question is not whether you are disabled; if your life is impacted by differences that are a natural part of your identity not conforming with society, you are Disabled.  It’s just a question of whether you need the formal paperwork.  Unlike those with physical disabilities, those of us with hidden disabilities have a greater degree of choice on whether to diagnose.

To Diagnose or Not To Diagnose

Choosing formal diagnosis is an individual choice, though many children and teens have to be formally diagnosed for educational purposes.

It is worth mentioning, it is easier to get a diagnosis as a child or teen since there are more specialists working in this area.  It is difficult to find the right person to diagnose an adult since so few people believe Autism is a “real thing” and add to that the widespread misconception that only children are Autistic.  Therefore, if you’re parenting a potentially Autistic child, it’s better to get the diagnosis.  There are some other conditions that may seem like Autism, but are not, and you’ll want to help your child or teen to advocate for him or herself better by knowing which “group” (or groups) your child falls into.

As an adult, however, it is harder to get a diagnosis, and we may have moved past the need to be formally diagnosed.  We get a choice because, as I mentioned before in the post referenced earlier about society disabling a person, the medical community makes the diagnosis, but many of us follow the Social Model of Disability and thereby don’t need a “diagnosis” as an entry ticket into the Disabled community.  We can diagnose ourselves if we believe we fit the criteria.

Deciding whether to Diagnose

Ask yourself these questions:

1.  Do you anticipate needing accommodations (for yourself or your child)?  If so, how soon?  (Colleges use a recent diagnosis, so if you’ve had a child diagnosis, they’ll probably have you re-do it in high school anyway.)

2. Do you or someone else need to mentor this person and therefore need a formal diagnosis because you want to help him or her to learn to self-advocate for appropriate supports?

3. Do you (or your child) feel different and cannot be consoled by the Social Model self-diagnosis track?

Use these questions to help guide you on a path to a medical diagnosis or self-diagnosis.






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