A Reader Question: to Label or Not to Label?

14 Nov

I adore questions from readers because that means I don’t have to think about what to write about.  It also means I can procrastinate more on the nightmare that is the Georgia Alternate Assessment.

 

Alexander’s Daddy asks:

 

I need a little advise. My 3.5 year old will be entering kindergarten in the fall of 2008. He has high functioning autism, possibly asperger’s. I’m convinced I would have been diagnosed as a child based on the DSM today, but of course I never received a label. Do you think my son would be better off starting school without the label. He doesn’t need speech help, perhaps some intensive OT, but I am concerned that the label may in someway be used against him by teachers unable to handle an active boy. What are your thoughts? I bring this up because you wrote that the schools are now actually rewarded with funding for inclusion so maybe I don’t have anything to be concerned about.

 

This sounds a lot like my youngest son, Percy.  He was evaluated at the age of 3, and was found eligible for some services at that time under the significant delay label, including O.T.  In fact, OT was the main service although he did go to a special preschool 2 days a week for half days but stayed in his regular church preschool the other days.  The fact is, is that your son could be eligible for services NOW, and if all he gets is OT, now is a good time to start. 

 

And this is what I think most professionals and other parents will tell you.  Go to the school board office, ask to see a coordinator for special needs preschool and see if they can do an evaluation.  They’ll tell you if your son is eligible and for what services he is eligible.  Medical diagnoses will be considered, but the education system will want to do their own thing.  If he is found to be eligible, the Special Needs Preschool (SNP) coordinator will explain the process for getting him services.  These do not have to be full-time.

 

Here’s the deal: you really do not want to wait until kindergarten to go through this.  If your son has delays, you need to know NOW.  If he is significantly behind now, he will continue to get more and more behind over time.  The problem is this accelerated curriculum that is going on around the country.  I harp and grouse about NCLB, but this has been going on for 15 years where the curriculum is drifted into lower and lower grades.  Kindergartners are expected to enter in knowing colors, shapes, numbers and letters.  They will begin simple reading and simple math and will begin writing.  It truly is much more intense than it was when you and I were going through school.

 

Also there is the whole social skills business.  Fortunately my youngest has really picked up quickly from being around more typical peers (instead of his brother who is definitely high functioning autism) and might not even need anything but OT next year.  But students are expected to sit still, do lots of work and to generally behave coming right in. Most children will since they were in preschool or daycare prior to kindergarten.  Jane and I (mostly Jane) has worked very hard to make sure both our boys get as much social skills exposure as they possibly could and as early on as we could stand it. 

 

I usually advise getting the services as soon as possible.  It is far and away easier to be discharged from a service than to try to get in later on.  Percy’s OT evaluation took several months, and he did eventually get qualified but did not qualify for speech which we were sort of really hoping for.  Today, it is obvious he doesn’t really need it.  Thomas qualified for speech, OT and PT at the beginning but we were eventually able to discharge him from PT.  But I kept him on PT consult for an extra year, just because I knew that getting back in would be very difficult.

 

I wouldn’t worry about the label being used by teachers to exclude your son.  What it might do is help obtain some help and eliminate some grief.  Teachers are becoming increasingly educated about autism thanks to the parents who blazed the trail ahead of you.  The label might help them access some knowledge and adaptations for him where they might otherwise be prone to labeling him with a behavior disorder or even bad parenting.  Yeah, some teachers still like to lay it all at the feet of parents.  Sometimes it belongs there and sometimes it doesn’t. 

 

dick

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7 Responses to “A Reader Question: to Label or Not to Label?”

  1. Alexander's Daddy November 14, 2006 at 1:13 pm #

    Hi Dick, thanks for the reply. Let me give a little background as to what has occurred over the last 1.5 years. At 2yrs, he was diagnosed with ASD/hyperlexia. We began a 40 hr.week verbal behavior program that lasted until around March of this year because he accomplished all the skills in the ABBLS that were age appropriate. He’s completely potty trained, and we were surprised it was so easy. He can read simple words (knows about 100 words by sight and understands the meaning). He can count to 20. Knows all the colors, shapes (even wierd ones like dexihedrons sp?), letters backwards and forwards, can spell simple words verbally, his pronunciation is either on par with his peers or better (can speak upto 9 or 10 word sentences). He has had several IQ tests and language tests (except pronoun reversals) all of which have come out normal (he’s in an NIH study). He currently attends a mainstream preschool (5days a week for 4 hours a day) with a shadow who’s only responsibility is to work on his social skills and cooperation. He enjoys circle time and is learning to share. He has developed friends there, especially one girl and one boy. I would say his academic skills are probably at a 1st grade level with one exception, his writing skills are terrible and he hates to write or draw. This is where we are going to work on with an OT program that we will privately fund. We are fortunate in that we have had the money to pay for all of this out of pocket. We have spent nearly $70,000 over the past year and a half. Here is a video of him and me (please excuse the bed head): http://www.youtube.com/watch?v=uEKiRtopGJI

    Currently, he is beginning to listen to his teachers and will answer any questions. He still does not answer questions or respond to his name with his peers though. He also will have problems with transitioning away from things like fieldtrips where he wants to stay and explore more. He would have a hard time sitting for long periods of time (more than 2 or 3 mins) doing an activity he didn’t want to do, but I had the same problem and I don’t know if he is really that much different from other boys. He’s not aggressive and probably a little too passive with other boys who will take advantage of him.

    He can be quite non compliant at times but perhaps one difference with him from other ASD kids his age is that he has the verbal ability to tell you why he doesn’t want to do something, right or wrong. He would definately frustrate a teacher who is anal retentive. He also picks up on explicit non verbal communication such as when you shake your head, look happy, look sad, look angry and so forth. He also has days when he just wants to be left alone, but not all that often, maybe once every 5 or 6 days.

    What the video will show you is how he is when he is interested in something. What it won’t of course show you is how he acts when he isn’t interested in something.

    Knowing this background, would you give the same advise or perhaps wait maybe until the spring of 2008 to make a decision if he continues to progress?

    I should add too that he can be quite a bit different when he knows he is being tested or evaluated.

  2. Dick November 14, 2006 at 1:45 pm #

    Okay, I think I get it. The school blocks anything YouTube and my home connection is dial-up, so I’m not sure if I’ll ever get to see the video. But you give a pretty good background. My oldest sounds similar, but your son sounds like he might be further along and better off for all the help you’ve been giving him.

    I would give the same advice, but for a couple of new reasons. First off, it will help if you can know the special ed. people in your district as well as the other parents. Let’s suppose your son is eligible for services, you still have the option of keeping your son where he is. The school district will be okay with sending an OT out to his school (if it’s not out of the district) and work with the teachers who already know him…at least as long as you don’t make them pay for the rest of his schooling. Think about it: they can identify and serve a kid with special needs and will get some funding without all of the overhead!

    It sounds like he is doing well where he is and I can see why you wouldn’t be keen on switching him up too soon. Getting him identified and getting an IEP in place does not automatically mean he would have to attend a different school. If I were the LEA at your son’s IEP, I would encourage you to keep his placement the same and then let him visit the new school a few times at the end of the year to help with transition. There are (or should be) itinerant service providers for students like your son in other settings besides the public school. More restrictive settings are very expensive and the current versions of IDEA and NCLB make self-contained settings even more prohibitive for school districts.

    dick

  3. molly_g November 17, 2006 at 7:52 pm #

    I would have to agree with you Dick. On a really really pragmatic level: If one were to wait until the beginning of a school year at a general ed kindergarten, the special ed staff and all of the resources in the district would be quite strained, as there will inevitably be many children who would need to be assessed for special ed of many kinds at the beginning of a given school year. You clearly have access to these resources now, I would give it a go.

    I would love to know more about social skills training, if you get a chance. My son, who is currently diagnosed ADHD and bipolar, is currently undergoing assessment for a PDD-NOS diagnosis, and reading social cues is among his biggest difficulties.

    Take care!
    Molly

  4. Barbard-Earl Jones and Lindsay-Alexandra Jones January 5, 2007 at 2:09 pm #

    Hello, Dick. I have a son who is 5.1 years old he is in junior kindergarten. Dicky-D. Jones has speech problems and has been very aggressive with me. He will kick, scream, once destroyed my China pot and touches my breasts. My sprouse and I are wondering if this behaviour is normal for a child with hyperlexia.

    Please Help Me!

  5. Dick Dalton January 5, 2007 at 2:39 pm #

    How is he doing in school?

    dick

  6. Barbard-Earl Jones and Lindsay-Alexandra Jones January 6, 2007 at 9:51 pm #

    He is actually doing quite well in math and reading. He does poorly in the other subjects taught. The teacher has a hard time understanding his problems and trying to get him to behave in class. He’s very agressive when he doesn’t get what he wants and won’t get along or play with his fellow classmates. How can I make him understand that touching and hitting other people is a wrong thing to do?

    Thank you for all your support,

    Barbard-Earl Jones and Lindsay-Alexandra Jones

  7. Dick Dalton January 8, 2007 at 4:56 pm #

    Well, if it is a matter of teaching him the effect that his hitting has on others, I’ll suggest Social Stories as a possible intervention. You can learn about them at the Gray Center here:

    http://www.thegraycenter.org/

    Social stories have a substantial research base of support so it’s worth a try. I’ve used them with some success in the classroom and at home.

    Good luck!
    dick

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