One Year and Counting…

“…exhibits symptoms consistent with Autistic Disorder… Exhibits impairment in his use of gestures, does not interact with peers, and is lacking in his spontaneous seeking to share enjoyment, interests and achievement with others.  Further he has difficulty responding appropriately to others’ emotions and exhibits atypical social reciprocity.”

These were some of the many words I read in the first official diagnostic evaluation we received a little over a year ago.  These words struck like a bomb that detonated and scattered shrapnel everywhere causing injury to me – not my son.  I healed up, scarred over and went into battle for my son – to find him appropriate therapy and care.  Looking at the report, in a way, I feel like we’ve made no progress.  He was 3 years and 10 months old when diagnosed.  Now he is 4 years and 10 months old.

He still does not use much in the way of gestures to communicate.  He does not interact with peers.  He has always spontaneously sought to share his enjoyment and interests and so I disagreed with this statement from the beginning.  I find it ridiculous that an evaluator is even allowed to make such a judgment when she met and evaluated my son on one day of his life for a total time of about 2.5 hours.  Overall though, looking back on the report, it was not nearly as horrific as I remember believing it was at the time I first read it.

My son never seeks out others to share his “achievements”.  I think this is because he figures what he has achieved (reading far above his grade level, spelling above age and reciting math equations) is nothing out of the ordinary.  He cannot and does not measure himself against his peers. In fact, he has so little interaction with “peers” that he is really incapable of measuring his accomplishments against anyone else’s.

I do not think he has made “progress” in understanding how to respond to how others feel.  I don’t believe that he ever had difficulty understanding how to read emotions.  He has and had difficulty in knowing what would be appropriate in terms of responding to an exhibited emotion by someone else.

For example, when he was diagnosed, he did not really know emotions too well.  To sort it out for himself, he would say, “Mommy to cry.” trying to induce me to perform the requested act.  This was not because he wanted me to be sad.  He wanted me to exhibit that emotion so he could learn the face that went with sad.  He knows all of my faces now and recognizes sad, happy and angry in others.

He met the criteria for DSM-IV’s “Autistic Disorder”, according to the UC Davis Mind Institute’s staff for the following reasons:

Social Interaction:

X    Marked impairment in the use of non-verbal behavior (e.g. eye contact, gestures) to regulate social interaction.

X    Failure to develop age-appropriate peer relationships

X    Lack of spontaneous seeking to share enjoyment or interests

X    Limited social-emotional reciprocity.

Communication:

X    Delayed development of language

       Limitations in reciprocal conversation

X    Idiosyncratic, unusual language

X    Delays in the development of pretend play and imitation

Restricted, repetitive behavior:

X    Intense interests and preoccupation

X    Inflexible adherence to nonfunctional routines or rituals (isn’t this really OCD?)

       Stereotyped and repetitive motor mannerisms

X    Persistent preoccupation with parts of objects.

So of all the criteria listed, he did not qualify as autistic in only two categories:  “limitations in reciprocal conversation (or they forgot to check that box -which – unless I’m misunderstanding the words – I think he has this problem) and “stereotyped and repetitive motor mannerisms”.  He does not hand-flap nor spin repetitively or daily.

He still has trouble with all of it except the lack of spontaneous seeking to share enjoyment or interests (which I do not believe he ever had) and inflexible adherence to nonfunctional routines or rituals.  He can be redirected and re-focused when a routine is broken but will need a social story for major changes to process any permanent changes.

He openly uses eye contact and hand gestures (pointing) to those he knows well and trusts.  He does not make eye contact with the casual acquaintance or people who are only around once in a while.  In effect, he will not make eye contact as a sort of social dissing to those who are not part of his inner circle. Other than that?  He is more than willing to make eye contact.

He still has no “friends”.  He hangs out with his “friend” B at the mall when B’s mom and I talk at the toy store where the boys play side by side without talking or sharing anything other than space.  He considers B his “friend” and B considers my son his friend. B talks but my son does not respond.  B is a sweet and patient boy who keeps on giving and trying with my son.  My son is lucky to have him around.

B and my son "parallel" play.

My son still has unusual language, intense interests and preoccupation, rigid routines and persistent preoccupation with parts of objects.  None of these things on “the list” are all so evil and difficult.  I think these traits may help him hone his skills for adulthood.

I wonder sometimes, what changes are attributable to all his therapists and now much to him alone as he gets older.  As he grows up, maybe he will be able to tell me. I hope his communication improves.  Then, I may feel like celebrating this kind of anniversary.

Remember that it is not where you come from, or not even where you are; it is where you are going that matters most.   

Bo Bennett  


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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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23 Responses to One Year and Counting…

  1. I have to humbly disagree with you Karen. I think that even in the short time I have gotten to know you and Tootles from this blog, I have seen plenty of evidence to show that he *has* moved forward from 3 years, 10 months, and his diagnosis.

    For example, in your post yesterday, you shared that Tootles understands when you are upset and even goes so far to apologize for bad behavior. If that is not social-emotional reciprocity, I’m not sure what is. Granted, he needs some work in improving his behavioral response, but if there is a mom out there who can help, I KNOW that mom is you.

    As for friends, we have to know that with our kids, “friendship” is not something we may ever be able to define with our own experiences. The fact that Tootles accepts B and B accepts Tootles is a beautiful thing. And even if they are not playing “together,” so to speak, they have a fantastic foundation for the next level of friendship. It’s up to them to choose when and how that will happen. Given Tootles’s relationships with the adults in the office, I”m willing to bet that he is plenty capable of getting to the next level — after all, we learn how to nurture our own peer relationships based on the relationships we have with adults first.

    No, I think you have plenty to celebrate, my friend. You have done wonders with getting your son in the right therapies and providing the all-important early intervention as soon as possible. You have turned your world upside-down and hollowed out opportunities for your son to thrive in every available corner. You are an AMAZING mother to one brave and talented little boy!

    • Tootleslady says:

      I agree with Karla! Little tootles has made many leaps and bounds and understands so much more than he ever has, and I know this from first hand experience! He is wayyyyyy more advanced than one year ago!

      • solodialogue says:

        Oh, Tootleslady – I know you and Karla are right! I just could not really see it late last night when he was Tasmanian Devil’ing the bedroom with toys and scripting. You know…

    • solodialogue says:

      Karla, you are so wonderful and kind to give me another perspective! I wrote this late, late at night – and guess who was not sleeping but tearing apart his room while yelling, “Press FOUR! Press the number FOUR!”? As I looked at the factors going into the diagnosis and watched him – I, in tiger mom mode – felt somewhat depressed.

      I know in my heart he has made progress. It’s this acceptance thing, together with knowing how slow it goes that lent the tone to this post. I know I am a very lucky mom to have a beautiful and genuinely good son but, in the moment, this was how I felt.

      Thanks for your positive spin – everything you say is true (especially the AMAZING mother part (lol!)). Thanks. 🙂

      • It’s only fair that I get to cheer you & Tootles on once in a while after all the cheering you’ve done for me and Kaia.

        Both you and I… heck all of your readers for that matter — we all know how easy it can be to fall into the depression trap when things get overwhelming. It makes me so happy each day to remember that I’ve found people like you through the internet who share this journey and are there to give the old “rah-rah” with things get dark!

  2. Teresa says:

    There are few things I remember so clearly as the day our son was diagnosed. It was crushing news. Back then, the doctors and therapists took a pretty dim view of how life would be. Thankfully, more knowledge and research has shown the outlook can be not quite so grim. But, no doubt it’s a lot of work. And if there is one thing we have learned over the years, it’s that consistency is a very important thing. And being consistent can be very tiring…
    One of the programs we were part of required visits every six months. We worked with a team and would be given a set of goals to accomplish by our next visit. As part of the visit we would fill out all kinds of reports on our efforts. While in the day to day routine I could not see progress when I would fill out the reports and look back to where we were it would become apparent. The progress you make minute by minute, day to day, week to week might not seem obvious but you are moving forward. Some improvements come slowly and many are not big enough to even note but when you look back you can see the changes. Trust in yourself that you are doing the right thing and most important have lots of patience. Know that every day you are moving forward, you are not moving back. Keep the faith and stay strong!

    • solodialogue says:

      Thanks Teresa! The reports I receive are weekly and monthly but they are written up by the behavioral team who tracks his progress without me filling in anything to show what I’ve seen of his progress. When I read the periodic weekly and monthly reports, I know in the moment he has mastered things but going back to the core factors of the diagnosis filled me with the raw emotions of the day. It really was as you say “crushing”.

      You are so right about patience being the key – something I need more of all the time. I seem to run out of it every day! Thank you so much for your perspective. You’re helping lift me back out of this and on to working even harder so next year – I will look back and see the positives! 🙂

  3. Lizbeth says:

    Your little one is making TONS of progress. It’s sometimes hard to see when you’re in the trenches wearing snot, puke, and wait that’s me…but anyway, you get my point???

    The only way I get perspective is from someone who is close to me who see’s A and they say, “Wow, he’d doing X,Y,Z” and I’m like, “whaaa??” because I’m too close and can’t see it. And it’s super hard when they’re on a plateau and not (seemingly) making progress.

    I look at those reports with a grain of salt. They use them for so much else–insurance, billing, IEP stuff and they check the boxes and go on. I used to sit and disect them, try to elicit meaning from their words….now I just scan them and move on because I’m the expert on my kid, not someone wo’s doing a 2.5 hour interview…

    • solodialogue says:

      Lizbeth, you always know how to make me laugh! You are right of course. I need perspective. Everyone has been giving me that today. We are the experts, aren’t we? 🙂

  4. Aspergirl Maybe says:

    I just found you through a comment on Journeys with Autism and wanted to say hi. I can’t exactly remember what I thought a year after my son’s diagnosis – I think I was still just feeling so clueless about what to do. However, we just went through some testing and I had the experience of going through a checklist and checking off all but two of the items out of about 30.

    So, at age 9, my son is still solidly autistic, just like when he was three, and yet he is a completely different child in the way he is able to express himself and interact with the world. He has made so much progress in what he is able to do, but who he is and how he approaches the world hasn’t changed, and that’s okay.

    I don’t know what is still to come for him or for your own son, but one thing I have learned is that developmentally delayed doesn’t mean there won’t be development, just that it will be on a different time table.

    I know you don’t know me, and this is the first post of yours that I am reading, but I just wanted to encourage you if I can.

    • solodialogue says:

      I love Rachel!! So glad you came by – I’m very grateful for the encouragement! Telling me your son is a completely different child in his ability to express and interact gives me hope. It’s so hard to see from ages 3 to 5. “Different time table” will stick with me. Thank you. 🙂

  5. These anniversaries can be really depressing. But I like what Lizbeth said about the purpose of the evaluations. The first time I read one I cried for hours and took each sentence as a personal attack. Then someone told me that if they didn’t describe it in the worst light possible he wouldn’t qualify for the right services. It made it a little better, I guess.

    • solodialogue says:

      Thank you Christy. I do understand that the worse it sounds in the report, the more the services but the report and my son’s behavior late last night were matching too well for me not to feel the tinge that I did. You (and everyone who comes here) have been so supportive. It really helps to broaden my perspective and is greatly appreciated.

  6. Lynn says:

    Progress is so difficult to measure with our kids. We are 5 years aways from our diagnosis and I couldn’t even articulate where she is now vs. then. Of course there has been progress, but it’s hard to describe. Very interesting that they didn’t check off the reciprocal convo…that is a huge one that Audrey can’t even do very well yet. BTW, that looks like the same exact checklist that Stanford used…thanks for the flashback 🙂

    • solodialogue says:

      Progress is hard to measure, even at one year when I’m standing in the middle of the construction zone. (I’m sure they just forgot to check the box on reciprocal conversation since his limits are major). I feel like there must be progress – he’s speaking in more complete sentences – it’s just the unknown that scares me – just like everyone else. I hope I get to the point where I can look back like Aspergirl Maybe and see the differences more clearly. 🙂

  7. Big Daddy says:

    If I looked back at Griffin’s original diagnosis (coming up on a dozen years ago) I’m sure I could still find plenty that still describes him. But, while it may have been difficult to see day in day out (or even year in year out), he has made incredible progress. We just keep pluggin away and hope for the best.

  8. bbsmum says:

    I think the most important achievements are the ones they can’t measure… feeling more confident, tolerating over-stimulation for a few seconds longer each time, processing things very slightly quicker… tiny steps, but they add up eventually.

    • solodialogue says:

      Really astute observation, bbsmum! There is no way I could measure his feelings of confidence, tolerance and processing. I know he tolerates more and maybe that means he can process things a little quicker. Great point – thanks!

  9. Heather says:

    Ugh, these anniversaries are never fun ones are they? So much emotion involved in the day our children were diagnosed. It’s insane how much detail most of us can remember about that day too.

    I have to agree with the other commenters, your son has made amazing progress 🙂 It’s so hard to see it on hard days, I can agree with that!

  10. eof737 says:

    He has made a lot of progress and so have you. You have been instrumental in helping him learn coping skills and more; especially in terms of learning the right tools to use to help him… You are both to be applauded. 🙂
    Eliz

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