Asperger's Diagnosis (or not)

Matthew is undergoing his evaluation for Asperger’s. The ADOS, the Wissler Intelligence Test for Preschoolers (that just sounds ridiculous, doesn’t it? Intelligence tests for preschoolers…) and an attention test (can’t seem to remember the acronym for that one). We started last Friday, and we will have two more testing Fridays followed by a ‘review of the results’ early October.

There’s the official news.

So, we go into the psychologist’s office two Fridays ago – me and my hubby Jeff -- to meet with her and tell her all about our darling son.

We both immediately like the new psychologist – we aren’t seeing Gabriel’s Psychiatrist or Pediatric Neurologist because the wait is TOO DAMN LONG – and liking the new psychologist is a great start for both of us.

We get to the conversation about attention. I say, "Matthew doesn’t have a very good attention span for things that others choose." Like his teacher. Or me. "When we give him something he finds less than intriguing, then he leaves." Most likely going to practice coupling his trains so he can shunt some more jobi wood to the new rescue center or some other Thomas-themed activity. BUT, I add, that this is a skill that he has shown growth in during the last school year. During those six months, he has learned to participate in all of the school activities (none of which are coupling or shunting) and happily transitions from one to the other (by ‘happily’ I mean with an adult helping him to read his personal visual schedule and then with only two or three verbal reminders; happily).

Jeff quickly disagrees with me.

He claims this is not an attention issue. He says that because Matthew is getting better at this type of thing (paying attention to less-than-interesting things) he is showing an increase in TOLERANCE. Arguably, by my husband, a much more useful skill in real life.

You see, in Jeff's view, Matthew doesn’t have an attention problem, he has a tolerance problem. And in life, you always have to be tolerant of things you are less than facinated by. Like school lessons or wife droning on and on about topics that do not include cellphones, football or Star Wars.

The apple doesn’t fall far from the tree, people.

The psychologist showed great attention tolerance while Jeff said his piece, then we moved on.

Matthew had his first hour and 20 minutes of testing the next Friday (last week). I took him alone, and he was happy as a little clam to go.

While he was in her office, I sat in the waiting room and filled out the 15 pages of questionnaires. I think this is the umpteenth time I have done this, not just because I’ve done them yearly (it feels like) for Gabriel, but I did them for many foster kids as well. So, this is a simple task that I in no-way-shape-or-form over think. “If you have any questions, mark them on the form and we can go over them.” Our nice new psychologist says, and I was like, “Yeah, I won’t.” 

Quick piece of advice on these forms:  do them quickly, answer with your gut instinct, don't discuss them with your hubby.

When she returned with Matthew, who needed a break (which ended up just being the end of the appointment), Matt grabbed my iPhone, went to YouTube and turned on his Thomas the Tank Engine videos, then promptly crawled under the chair to watch them.

Yet he can’t cut out a circle (age appropriate small motor skill activity) and he can manipulate my phone, computer, and keyboard (advanced small motor skill activity).  Can you say "gap in development"?

I had a great conversation with the psych during this time. She is very approachable, and truly seems to like my kid. BONUS POINTS.  She even said she saw how he used his advanced language skills to compensate for his lack of skill in other arenas -- namely social.  We talked about so many of the Aspie characteristics that Matt has – and how he is so borderline for a diagnosis.

Aspie traits (stereotypical or not):

Dislike changes in routine: CHECK
Avoids eye contact: CHECK
Formal style of speaking: CHECK
Talks a lot about his favorite subject: CHECK
Sensory issues: CHECK
Delayed motor movement: CHECK
Gaps in development (hence the cutting vs. typing issue): CHECK
Rote speech patterns: CHECK
Great intelligence (stereotype): CHECK
Preoccupied with special interest: CHECK
Social skill issues (lack of interest in peers): CHECK

Matt shows all of these things – but minimally. Some days I think, “Gosh, no way Matt actually has Asperger’s, I should skip the evaluation…” and then we arrive at the first day of school and Matt says, “Well….Hello, Ms. Diane….” His arms stretched out to each side, then a head tilt, followed by, “Misty Island Rescue comes out today and when I get home I get to watch it. Didyaknow it has three new engines? Bash, Dash and Ferdinand, but I don’t know where Ferdinand is…he wasn’t at Fred Meyer….”

And I think nope. ASPERGERS.

I expect that he will meet the criteria for diagnosis. Just barely.

And I also expect that if we retested him next year, or the year after, he may not. He is learning so much so quickly, and maturing faster than I expected in preschool. But the ‘label’ will be helpful in Kindergarten, and you and I both know that no matter what labe he has or doesn't have, he is still Matthew. And the way he is wired is just awesome. AWESOME I tell you. Awesome.

I’ll keep you posted on the testing and results. I’d say “cross your fingers” but I have no idea what I would be asking you to hope for – Autism diagnosis or not?



Chynna said...

Good luck, Hartley. You and Matt are in my thoughts and prayers. He sounds ALOT like Jaimie, who will be assessed on Wednesday. =/

Thanks for sharing what's going on and we'll talk soo.


Jaimee said...

It's interesting that we all seem to be going through this at the same time. Our psychologist wants to look into Aspergers regarding our SPD child and we're scheduled to talk in more detail about it, and do a screening test, at our appt. next week (without him present). If it goes next to the full evaluation, I have no idea how he'd get through an hour and a half of questions. We've never done an assessment aside from the SPD one.

Thanks for posting about this Hartley. It helps me to read your experiences! Hugs to you and Chynna both.

Anonymous said...

This sounds so much like our story last year - almost down to the same discussion we had w/the psychologist. I told him our son had meltdowns leaving a preferred activity, and my husband said "well, it's because it's something he wants to do. He's totally fine when it's something he wants to do!" But then again, he wasn't fine...
I know that whatever the outcome of your tests you and your family will handle it with grace, as you have done with everything else. Think of how lucky your kids are to have you...:-)

In Real Life said...

This really resonated with me, we went through the same thing when my daughter was being diagnosed with Asperger's. Nearly four years later, I still sometimes think to myself..."Maybe she doesn't quite have Asperger's, she's doing so well, and learning so much, maybe it is mostly related to her SPD", then the next moment something will happen and I will think, "Nope, definitely Asperger's why did I even think it wasn't?"

I love what you said about Matthew still being Matthew...this is exactly how I feel about my daughter, she is an amazing girl and I am so lucky to be her mom, Asperger's is just a part of her personality, it does not define who she is.

Caitlin Wray said...

Well Hartley, you know if you get that label, I'll be the first in line to welcome you to the club! And you also know how much I do truly love this club: squabbles, wacky rules, forgotten passwords and all. I can't really imagine Simon without Aspergers, it's such a beautiful and mysterious part of who he is, and as much as it makes me crazy some days, it mostly amazes and inspires me.

Keep us posted :)


Carol Kranowitz said...

Thank you, Hartley, for posting the link to "Growing an In-Sync Child: Simple, Fun Activities to Help Every Child Develop, Learn and Grow" (Perigee, 2010). Joye Newman, a perceptual-motor therapist, is my awesome co-author.  We wrote the book because we share the same philosophy, that ALL children are born to move, whether or not they are challenged by autism, Asperger's, or sensory processing disorder. We also believe that most children in our society don't get sufficient opportunities to move in purposeful ways.  "Growing an In-Sync Child" has 60 fun, functional, and flexible activities. The movement experiences will give kids a leg up -- and will last a lifetime.  Check out our website at    Hope you like the book!

Anonymous said...

I've gone back and forth about whether or not to have my son evaluated for Asperger's. He's much like your Matthew. There are some days I wonder what I was thinking. And then there are those days that you may as well put his picture on Wikipedia next to the definition. It's so hard to know whether or not to pursue the label. My best to your family as you go through this - no matter the outcome.

Tammy said...

If you've read my blog lately, I am saying the exact same thing. One day my son seems totally normal, the next the textbook case for early Asperger's. Our evaluation is on Oct. 27th. I will be interested to see how your eval goes! Good luck with yours!

Riayn said...

As an adult Aspie who was only diagnosed this year at age 35, I say go for the diagnosis, get the assistance you need at school as soon as possible. Nothing beats early intervention and Matthew sounds like he would be a perfect candidate for it.

Hartley said...

Thank you all for your comments! I know that Matthew has always marched to the beat of his own drum, and I know he is right there on the cusp -- I am hopeful that a diagnosis (even if some day he 'out grows it' not that he will ever actually NOT be wired differently -- which incidentally may be my FAVORITE thing about him!) could truly make a difference in the way the school works with him and the level of undertanding and accommodations they are willing to give him.

I am just terrified that they are going to be like "Here cut this circle out and let's do a project!" and Matthew is going to say, "If you have a problem with your computer, I am happy to help, but as for circles and craft projects, that's not my thing." : )

I will keep you all posted!!


Megan said...

I love my two nephews with Aspergers--they are so bright and so entertaining! And yes, your son sounds like he fits the bill. It's not all bad, but quite challenging. Just what you needed, more challenges!!

Kristen said...

I hope you find some answers! My 7yo SPD son went through several 1 hour assessments but he never fit 100% of the autism criteria. Finally at age 6 I found a neuropsych who was willing to spend HOURS with him, evaluating ASD and ADHD. Her conclusion - borderline ASD (so a PDD-NOS dx). BUT she clarified that if we had not been as astute when he was 2yo and chased down his SPD to start OT & ST then, we would be facing a full-on and more significant Aspergers dx.

Funny thing was that since our school system won't recognize his SPD but clearly agrees he needs services, they qualified him as ADHD and not Autism b/c he's barely on the spectrum and he would be miserable in the autism room. It took me awhile but I was finally ok with labeling him something different just to get to the end result - and he's doing fabulous in school now that he has help. His IEP is structured around his SPD needs but gets the additional services to meet his ASD needs as well and we all fully expect him to come off the spectrum in the next few years.

Valerie Foley said...

Hi Hartley,

What a wonderful post. We've just gone through a second ADOS and it was a total waste of time (for a lot of very Aspie reasons!) but Oh, how I relate to where you guys are with Matthew right now.

Especially with the awesomeness.

Thanks for your lovely comments about Through My Eyes. If you'd like an mp3, let me know by email, and it's yours.




Anonymous said...

From High functioning Austism to Aspergers, to PPD-NOS.. Tommy has been diagnosed with them all, and he will be 4 in a month...the latest Psychiatrist said, " No aspergers.. rather PPD-NOS." Possible? Not sure.. seems aspergers to me, always has, except now, takes an interest in others.. somewhat.. PPD-NOS has all the things an aspergers diagnosis has, but the child is just quite NOT aspergers.. Hard to say for us.. With intervention, one could say become more social... hence a change in diagnosis... but I think we are so comfortable with it, its hard to accept a different diagnosis altogether.. too confusing sometimes..

teastress said...

We just found out at the beginning of the school year that my oldest has aspergers and right now it's very frustraiting. The school wants to treat him "normal" when his normal isn't our normal. I have already gotten two disciplinary notes from school and before his therapy can begin am anticipating more, lovely. Thanks for sharing your story. In the meantime I am reading parening your aspergers child to see if I can get anything that may help josh succeed socially in school.

Texjoyce said...

I was told that my son is borderline Asperger's as well. I am having to go to family counseling with my siblings in order to explain to them about my SPD kids also. It is sad when your own family will not accept differences in your kids!

Anonymous said...

Aspie or not, ADHD or not, PDD-NOS or not, he's still your son and you love him just the same. I think that is the difference. A diagnosis will not alter how you feel about him, it may alter how you choose to approach coping strategies.

But all in all, you're addressing concerns and getting help, which is the best thing you can do.

Many hugs from over here!