I don’t know if I’m ready….

I don’t know if I am ready for this post. To write it. To understand it. To mean it. To be comfortable with myself to say here I am folks and it may not be pretty. You have been warned. This post is long and rambling but while writing it I had an epiphany.

Regular readers know that Boo has an undiagnosed genetic disorder, probably neurological in nature. A month ago she had to undergo neurological-psychological testing to have a better excuse than we don’t know what the freak is wrong with your daughter to satisfy the State and Insurance Gods.

Last week we received the results of the neuro-psych testing. Most of it was unsurprising. Boo has an intellectual disability (no kidding), she has a sensory processing disorder (um, yes but did you see her video at the beach?), delayed language and….autism.

I’ll get back to that last one in a moment. For the Intellectual Disability we were thankful that her skills are scattered, so she shows not only growth but potential. The majority of her skills is in the “very low” (disabled) IQ but she did have a smattering of “low” IQ in some areas. 

They asked me if I believed the testing and I said I did with the caveat that had Boo’s known therapists had performed the tests she would have had stronger results. I do not believe the Psychologist put the tests in a context where Boo understood what was being asked of her. But they are standardized tests and the tests have to be done the same way. Let’s just agree to disagree on that one. Right, Boo’s therapists who are reading this rant?

I asked why, when for all this time we were repeatedly told our daughter did not have autism this decision was made. I am not adverse to the label, but I want the reasoning. According to the “standardized” testing Boo qualifies as Autistic due to her hand flapping (although this is only with excitement and not a stim), her sensory issues, her toe-walking and her social skills. Plus some other fancy words but I had kind of stopped listening.

Um, what? You had me until social skills. I agree with everything above when except social. I did not think I could have a child more social than Abby. Boo loves people. She loves to please, she loves to be around her friends. 

What I learned is that social interest/motivation is different from social ability. The Psychologist also expressed worry that Boo will interact only on her own agenda. But when prompted to look at the Psychologist she wouldn’t. Again I said, had her therapists she sees everyday had conducted the testing I believe the results would have been different.

But they are standardized tests and the tests have to be done the same way. Yeah, I heard you the first time.

I asked if where Boo is developmentally may have some impact on her social “ability”. Unfortunately as delayed as Boo is, developmentally her social development is even more hindered. Had the delays been closer together they would not have been so concerned.

But here is the kicker…when asked how this changes what we do for Boo. Now that she is autistic what therapies do we add, what do we take away, do we try play therapy, try yoga again, anything that I haven’t thought of….I was told:

“Keep doing whatever you are doing”.

Yeah, thanks for that.

I’m not upset by the autism label. Okay I was at first. I was worried that I am in denial. However in truth, my fear of the label is that doctors, teachers and therapists will stop looking to see what is at the root of Boo’s issues. I called her neurologist, whom I not only adore but respect and trust. 

Am I in denial?, I asked. Has Boo had autism all along and I just didn’t want to know?

No, she replied. With the standardized testing Boo qualifies for the autism diagnosis. We have never tested her before with ADOS due to her intellectual disability. Once you get down to the testing, where her strengths and weakness are clearly shown you get a better picture.  But (and this is an important but she stressed) autism is not only what is wrong with Boo. What is wrong with Boo is she has an unknown genetic disorder, an intellectual disability and other medical concerns that now include autism. 

Our Boo, she said, is something unknown and also all these things we can name. Our goal now is to make sure no one ever stops looking at the whole child.  

I struggled with this post, for some time. I struggled with understanding what autism means to me. I have plenty of friends whose children have autism. I know it doesn’t make them less. I know that they are just like Boo, unique and lovely and precious. But after all this time this was one diagnosis I never considered. Or been told to consider by her team.

I just thought Boo had an intellectual delay. I think, honestly that was easier to deal with because delay just meant she hadn’t caught up yet. Flights are delayed all the time but eventually you get to your destination. 

Epiphany time! There was a hope that was buried deep in my heart that I never knew was lingering: that she would, someday, catch up and plateau. Did I think she would be a Harvard grad? Not so much. But then I am not too impressed with Harvard grads lately. 

You don’t recover from autism. Boo will always be intellectually disabled. The hope I didn’t know existed kind of broke my heart for a day or two. I struggled with this added diagnosis and the realization Boo may never catch up. My love never wavered that she will always be my Boo. That we will always do what we have been doing and continue to defy those who say she will not do….

It wasn’t until someone asked me if Boo was “a little autistic” and I could realize with a smile, that being a little autistic was like being a little pregnant.

Yes, Boo is autistic but she is also something so much more”, I replied.

2 thoughts on “I don’t know if I’m ready….

  1. MarathonMomma Martin

    I just came across your blog and I am thankful that I did! My son is undiagnosed as of yet (all docs agree he has some genetic syndrome, they just aren't sure what that is yet). But I have also been questioning lately how everyone has said that he is not autistic. I have done a lot of research and think he is probably on the spectrum. We are waiting to meet with the MD at the developmental peds that we go to.

    In the meantime, though, I wanted to say that I, too, had that epiphany recently. I had always thought that my son would “grow out” of a lot of his delays, etc. But as time has worn on and there are more and more issues, it hit me that this was more of a life-long thing.

    Thank you for sharing your thoughts and experiences.


  2. ettinacat

    First, you most definitely *can* be a little autistic! It’s called a spectrum for a reason!
    Second, autism is a symptom diagnosis – it’s assigned on the basis of symptoms regardless of their cause. In your daughter’s case, that’s presumably whatever genetic condition she has.



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