Autism in the Real World

getting an Asperger syndrome diagnosis gives Boyle a framework to make sense of some of the challenges she’s faced in life. And a medical explanation is a useful rebuke to people who defaulted to the cruelest sort of judgements

Intense World

learn about the Markram's and their personal and scientific journey to the intense world of autism

writing, coloring and learning

Whew, been busy... new job, fall illnesses (all those new germs being swapped at school), the cat needing to see the vet after a cat fight injury got infected... my own case of cat scratch disease (yes, it used to be called 'fever') - just a roller coaster.

My son's IEP got done, and in the end I think we got what we wanted. And what we wanted is essentially for him to be in the classroom learning the core material but being supported - again, in the classroom - if needed. From what I can tell IEPs often get loaded up with 'extras' that pull the child from class and end up overloading rather than supporting him/her.

As we stressed, we viewed in-class aid a bonus not only for our child but other children as well... then need not know the aide is there for our son per se and can benefit from the additional instruction as well. The key is to create a supportive environment so our son can do what he is itching to do: LEARN!

One of the specialists really understood what we were trying to communicate (the speech therapist) and she seems to be enjoying constructing new ways to interact with our son in his classroom environment without distracting him (or the rest of the class) from what they are there for. Win-Win! The teacher, I am not so sure she will ever get it, still of the 'look me in the eye' gotta 'live in the real world' view, but at least she has toned it down after we repeatedly hit her over the head with what he needs is an environment he can be comfortable enough to relax and grow.... And our son, he is learning, learning well and loving it, especially learning a new language. He practices his Latin (at this point colors and numbers) every chance he gets and is teaching his sister. And now he loves writing and asks me to help him write letters (by helping him with the spelling, he chooses the words and writes them himself).

Speaking of writing, we have found that thick markers make it much easier for him (kudos to Mom!), although his skill with a pencil has increased dramatically as well. But with the markers he does not stress about the line being 'a bit' off since, well, the line is so dang thick who can tell? At least that is how it seems to me. He has a special set of markers all his own and he treats them as a craftsman would treat his prize tools. And he writes and colors with them in ways he never did with crayons, pens or pencils. So my recommendation: get your autistic kid some fatty markers (heck your NT kid too). They take away a lot of the stress of writing and particularly coloring.

Have to pass along one anecdote: our son got his quarterly grade report, which was very good. Along with it were samples of his work and 'exams.' Again he did very well, except for one 'exam' where he did not finish coloring in all the shapes... his teacher was puzzled since she knew as well as we did that he knows all his shapes... but for our son the shapes were not the challenge... he spent his time trying to color as best he could, heck the shape he colored yellow practically glowed. And his teacher did not pick up on this at all: the fact that for our son knowing a shape is easy, coloring inside the lines is what he views as hard and so that is where he devoted his efforts. Not disabled... differently abled.

IEP

Individualize Education Program - the IEP - is the legal document that governs the 'special ed' that your son or daughter will receive. I've done three of these now, they have to be updated every year as required by law. However, since my son was diagnosed in late summer his first IEP was done in September and that is now the recurring deadline date. Not such a big deal last year when he was continuing in preschool with the same (wonderful) teacher. But this year it has been a huge headache.

Following from my last post, our son's school placement had been up in the air all summer. Now we were into the 2nd week in August and it seems as if we had no option but to send him to the neighborhood school, which for reasons (some detailed in last post) did not make us happy or comfortable. However, we received a 'last minute reprieve' - a charter school for which I had got on the waiting list called us after our first meeting with the district to complete our son's IEP. Someone had dropped out and they had an opening in their kindergarten class!

This was literally last minute as our son's first day of school was the next day. We met with the kindergarten teacher at the charter school and enrolled our son. This is a school I would have given my eye-teeth to have attended as a student myself, very rich course offerings, core knowledge focus (like our preferred school that had the autism program). But it was a complete k-12 school that only received limited support from the school district - only 2/3rd the funding per student, no busing, no lunch program!?! It is as if the district would like to see it fail... but it has been around 13 years and is rated one of the top schools in the state (and country as well). So we definitely feel fortunate that our son will be attending a school that is not only academically challenging, but also places an emphasis upon character and discipline. We are hoping and expecting that the latter will greatly diminish potential issues related to bullying and social isolation, whereas the intellectual milieu should help our son meet others who share his special interests.

But since the school has this strained relationship to the district, the IEP process has to be begun all over again... and now with the deadline fast approaching. This was unfortunate, since we did have a very productive meeting (sans the at-the-time kindergarten teacher) with the district, in which our son's former teacher made an impressive presentation (all the more disappointing that his teacher to be bailed on us). But now we had an entirely new team: new teacher, language, OT, psych and had of special services to meet with and get up to speed. Fortunately their school year began after labor day... unfortunately, a week of that time was wasted waiting for the district to supply previous IEP documentation (I eventually went and got it myself and hand delivered it). A meeting was set up, but then the floods came here to the front range in Colorado and it had to be cancelled. Now we were up against the legally mandated deadline... and everyone in my family was sick with a respiratory virus - courtesy of the start of the new school year :)

The good news is that the new team is aware how crazy it is for them to be expected to map out an IEP for a child they either do not know of barely know, and so they understood that what we had to do was create a placeholder until a proper evaluation can be done. 

So you parents out there: get and IEP done BEFORE the transition to a new school year so that those who have the best knowledge of your child's situation can actually contribute to assessing the strengths and weaknesses and setting appropriate goals and levels of support. 

The bad news was that our son's former teacher could not make the newly scheduled time, we had no leeway due to the deadline, our kids were all sick, and we were meeting in a tiny office with the kids screaming in the anteroom because a) they felt lousy and b) could not see their parents.

NOTE TO SELF - always request the IEP meeting to be held in an empty classroom - allows the kids to explore and play while in visual contact with parents but allows parents to devote attention to actual meeting as well. As it was I or my wife (me mostly) was absent from this very important meeting for long stretches trying to placate a sick 20 month old who would not stop crying... which got the 3 year old crying... the noise levels stressing our 5 year old autistic son (and myself). What a miserable experience!!

As to the content of the meeting: our concerns as parents were that the social aspect of our son's needs not be overlooked by a focus on intellectual achievement, as our son could probably do well intelletually even if under a great deal of stress/coping with his social deficits. Also we wanted to ensure that techniques to dealing with the class size were implemented: visual schedules, buddy system, help during unstructured social activity. We also wanted to make clear that we wanted to limit the amount of time he would be pulled from class for his 'special ed': believing that it is better for such instruction to integrated into the classroom material so that a) our son is not missing out on material and b) other kids can benefit from the techniques relayed. It also lessens the potential for our son to be singled out. We met what I take it to be the usual resistance to any 'tampering' or suggestions regarding 'how the class is to be run,' but on the whole this group has been receptive. Given that this was just a placeholder meeting, the true test will come in the next few months. 

At least the next round of meetings should be an improvement, as we only have one direction to go: up!

school placement

Transitioning from preschool to kindergarten should not be that big of a deal, or so one might think. But it seems that, at least in my school district (and we have a pretty good school district) there is a lack of communication between the preK and the 'regular' school system. For example, unknown to us each child is assessed by the school district to see if they need to attend a school that has a specific focus on helping children on the spectrum. None of this was disclosed to us and in fact the 'decision' was made with zero input from the teacher who had taught him for the past two years. She was not even in the classroom during the brief time our son was 'observed and assessed.'

Why is this important? Well, everyone we have met with recommended that our son attend on of the two schools that has an autism program. The assessment that took place without our knowledge (and without his teacher's input) however disqualified him to attend one of these schools on the basis of his PDD NOS diagnosis. In a sense the school administrators had decided he would attend his neighborhood school and receive any additional services needed there. But we were not informed of this, we were simply advised to enroll our child at one of the two specialized schools and to do so through 'school of choice.' We had no idea that there was a parallel means by which our son could have qualified for enrollment at a school that all the professionals with whom we had contact believed he should be attending.

Now it just so happens that this year is a bumper crop for new students enrolling in the district, which means that all the schools are full to the brim and beyond - and hence no room for a child trying to get into another school via 'school of choice' application. I had thought that the 'school of choice' mechanism was the only way in which students were assigned schools and so also (foolishly) assumed that my son would receive some sort of priority in getting assigned to a school that best fit his medical diagnosis - extra points, top of the list - who knows, but I thought there would be something. And there was... the invisible, parallel process of 'assessment' that was done without our knowledge or input.

Needless to say my wife and I raised a big stink. But due to the opacity of the process we only found out about this situation in early August (that is when the choice process is completed, at that point we were querying the various principals of the appropriate schools and one actually took the time to do the school district administration's job and explained this process to us. She gave us her personal cell phone and we discussed it over the weekend - true dedication!) We made a stink (in part due to the underhanded way we felt we had been treated, in part because the neighborhood school had done little to impress us that they truly understood our child's needs - they had had a reputation for bullying, no fence to prevent 'elopement' and other concerns).

Long story short, a team from the district convened to help put together then next IEP (again due very soon) and part of that process would be a complete evaluation that - who knows - might qualify our son to attend a school that had an autism program. No promises, and in fact, since the eval would take some time, our son would have to attend the neighborhood school or no school at all until the process was done. Again it seemed to us we were being railroaded, but at least we were getting some response now.

The principal of the neighborhood school (a recent import from another school district with grand designs to make the school a FranklinCovey 'leader in me' school - based on the writings of Steven Covey's "The 7 Habits of Highly Effective People") was cordial but did not evince any particular understanding or interest in our son's situation. The person who would have been his kindergarten teacher showed even less interest. She did not even stay throughout the initial meeting convened by the district. We attempted to meet with her prior to the meeting (during school open-house as the suggestion of the principal) but she waved us off saying we could discuss these issues at the meeting she was going to duck out of! And I do have to say, for someone who got their start in special ed 12 years prior, I was shocked to hear her say she has never dealt with a kid on the spectrum... so we were not brimming with confidence concerning our neighborhood school.

Progress

Our son built his vocabulary, but his use of language really skyrocketed after being integrated into a group learning setting. He had a small amount of exposure to group therapy prior to preschool, but it was preschool that really saw him take off in terms of using language.

We were also fortunate that he was placed with a teacher who really knew her stuff. Handwriting without tears, 'Mat-man,' visual images for schedules, attendance, buddy system - she used many techniques to play to our son's strengths and integrate him into the classroom. No simple add 'x hours special ed.' And the great thing is that all these techniques added value for the rest of the students as well. They benefited, our son definitely benefited and our son was not singled out as the 'class sped.'

The key to getting him into preschool was getting a proper diagnosis. As mentioned earlier, we were again fortunate to have a top-notch children's hospital in our state only 2 hours away. Once we got our diagnosis then we had the key to unlock the early intervention via the local school district - preschool.

I can't answer for my wife, but iirc at this time I was still thinking - not in terms of a 'cure': I knew that autism involved the brain being wired differently - but perhaps in terms of 'becoming neurotypical': reinforcing 'normal' practices and in so doing perhaps relying on the plasticity of the brain to make those connections to enable my son to function at an age appropriate level. In short, I still did not have a clear understanding of what my son's diagnosis really meant. I was under the misapprehension that 'normal' was the goal, when in reality it was not even an option.

What is the goal? Well, my child's ultimate happiness and life satisfaction of course, but achieving a functional level of social integration that provides a foundation for my son to reach those more ultimate goals.

My son is now using language at an age-appropriate level. Is he neurotypical? No, and he never will be. The 'best' he can do in this regard is to 'pass' for neurotypical. But that is also not true.

Actually, a better way of putting it is that he can do much better than merely passing for 'normal', he can be the best that he can be, and that means in certain respects he is already better off than his neurotypical classmates, in other respects he will be fighting up hill.

This evolution in my understanding that was not immediate nor was this understanding directly fostered by the folks that we have come into contact this process. Rather it came through personal research and the repeated attempt to understand the 'whys' behind the 'whats' that constituted by son's behavioral and cognitive strengths and weaknesses, to try and empathize with his internal logic. To paraphrase George Orwell, "it was a constant struggle to see what was in front of my nose."

what were the clues?

Our son got early intervention, so early he got it without a formal diagnosis. We his parents were frankly shocked when he was diagnosed. So what tipped us off to get help?

In our son's case he did not progress very far in using words. He was 'speech delayed.' Neither I nor my wife thought of it as anything more that that.

He wouldn't use words but would point or (especially) grab your hand and pull you to what he wanted. Being parents, we of course did what we could to interpret and in a sense 'enable' him. We wanted to provide for his needs and although we did want him to 'use his words' we also did not want to create unneeded stress.

We raised the issues of his language use with his pediatrician perry early, iirc around the age of a year and a half... which was pretty amazing given that we had just had another child, purchased our first home and moved all within the space of a month. I have to give credit where it is due, my wife was the one who really picked upon his language issues and pushed to get him help.

Our pediatrician recommended speech therapy, which initially focused on building a functional vocabulary.

Our son very clearly understood a large number of words. His comprehension vocabulary was never at issue. We could ask him to perform tasks and he could do so without any excessive difficulty. He just would not use words to communicate.

It was also not as if he did not know how to speak, he just - as far as we could tell - would not speak.

We as parents of course had read to him 'religiously,' we tried to exemplify in our every interaction with him how to speak, how to have a back and forth, to use signs, pictures, photos rather than words if necessary.

And working with a therapist for 50 minutes a week, who helped guide our efforts at home, our son did make good progress adding to his vocabulary over a period of six months. Which is when we discovered other aspects associated with his use of language.

Echolalia: repeating phrases - repeating questions back before addressing them, repeating statements, repeating phrases from favorite books and repeating scripts from tv shows. This seemed a bit odd.

Another curious deficit was the seeming inability to have a conversation.

Our son could use his vocabulary to make known his wants and needs, but would not have a back and forth discussion. You could ask a question and if it was very concrete and direct you would get an appropriate response. But if you wanted to ask our son how his day was going or how he felt you would not get an appropriate response but rather a piece of 'script' - for example, reciting text from one of his favorite Curious George stories that we read to him or a song from 'Blues Clues.'

So as far as my wife and I could see, our son was making progress, building his vocabulary (as I documented weekly) starting to use words to communicate needs but still needed work on the pragmatics of speech, using the components of language properly to carry on what neurotypical people would consider a typical back-and-forth conversation...

...And then his speech therapist casually mentions at the end of one of his sessions that our son was autistic, in her opinion quite possibly with Asperger's syndrome.

B O O M !

a special guy

My son is not obviously autistic, that is unless you try to hold a conversation with him, and perhaps not immediately so even then. He is what is called 'high-functioning': a candidate for Asperger's Syndrome.

(For those not in the know, Aspergers's Syndrome is a subset of autism. So much so that the official diagnosis has just recently been 'retired' in favor of a more general Autism Spectrum Disorder ASD diagnosis.)

Now like all too many, all I knew about autism or Asperger's were the media representations prevalent in our society: 'head-bangers,' Rain Man and Temple Grandin. What in the world could our special guy have in common with this rogues gallery?

Well, of course, these representations are extremely misleading, and I like so many others was misled.

Autism does not equal head banging mutes lacking empathy or feelings.

The actual Rain Man (Kim Peak) was not autistic, he had FG syndrome, Nevertheless, the stereotype of the 'idiot-savant' - that all those afflicted with autism or Asperger's (and are not head-banging mutes) are savants possessing photographic memory or capable of unthinkingly processing miraculous calculations - has taken root.

Temple Grandin, she was the 'feel-good story:' the rare individual who triumphed despite her autism, kind of like a Helen Keller of autism. But without really knowing anything more about her than the fact that she created a 'hug machine' and can think from the perspective of farmyard animals, I had no reason to relate what little I knew of her condition to what I observed in my child.

Our little guy is special: he is very affectionate, he loves to hug and snuggle. He smiles, obviously has feelings and emotions and made appropriate eye contact, or so I thought at the time.

Sure, he has his little quirks, things that we thought we unique and special to him. He loved to spin objects or watch spinning objects: wheels on his toy truck and his little red wagon and he was absolutely mesmerized when we took him to a restaurant filled with ceiling fans! This behavior, like some of his other little 'fixations' has decreased over time. (For a brief time he could not get enough of playing with coat hangers, hanging them 'just so' in different combinations all about the house; now he could care less.)

But other 'interests' have remained constant: he loves to watch slowly swirling water, whether in the picturesque little brook in our neighborhood park or going down the toilet. None of these type of things (lining up toys, being particular about sorting and ordering, extreme aversion to loud noises - which creates an love-hate dynamic with the toilet: loud flush - bad followed by swirling water - good) tipped me or my wife off to the fact that his endearing quirks could actually be considered components of a more general syndrome.

He is neither idiot nor savant, he is a beloved and loving member of the family and that is the reality for the vast majority 'on the spectrum.'

My Son, Myself

This is a blog dedicated to exploring autism, what it means to experience it and how those who are on the spectrum are perceived and treated by our neurotypical fellows.

My eldest son was diagnosed as 'on the spectrum' (PDD-NOS) a couple of years ago (is it nearly three years already?!?).

At first we only thought he had a speech delay. This was picked up by his (ever vigilant) mother, not flagged by his pediatrician. We got him into speech therapy, this was pretty early on, he was not much older than two at the time.

It was his therapist who dropped the 'A-bomb' on us, casually mentioning to my wife (as she was picking up our son from his weekly appointment) that he was autistic... 'oh but I have to run, I have another appointment.'

That night my wife cried.

I was frankly incredulous.

We were bewildered and worried. How could this very loving, affectionate little boy, who is very bright and quite aware of his surroundings, be autistic?

So began our (largely self)-education. As we were to learn, none of those wonderful qualities noted above are incompatible with being on the spectrum.

We scheduled a screening exam with a pediatrician who specialized in autism. We would get this settled and teach his therapist to not toss off a diagnosis so lightly! Or so I was thinking in preparing for the exam.

I can still hear one of the pediatrician's first questions (paraphrasing): 'does he like spinning objects?'
And my thought: OMFG does he ever! Ceiling fans in particular... and so our education was broadened. We learned a lot during that screening and the truth of the matter started to sink in for me.

A referral was set up for Children's Hospital in Denver (fortunately for our family, one of the leading children's hospitals in the US and only a few hours drive away).

Our son met with some of the most caring and wonderful professionals we have had the privilege to work with. They were very thorough and thoughtful. He has been back yearly and is always treated with warmth, dignity and compassion.

None of that changed the diagnosis, however, but it did change his the care he was eligible to receive. Preschool was now a possibility (we could not afford it otherwise). And what a difference preschool has made!

Our son was fortunate to have a dedicated, smart and truly caring preschool teacher (for two years in a row, ages 3 and 4).

When he began we had doubts as to whether he would be ready to attend kindergarten with his age cohort. Now, due to the hard work of his teachers, himself (and yes, the parents too, whew) our son not only scores age appropriate on his use of language he is also attending kindergarten with his age group.

None of this is to say that he is 'normal' or 'cured.' He is not and never will be. But like his peers he can function appropriately given his age. How he manages to do so may involve different techniques depending on what skill we may be discussing. Learning about what my son's strengths and limitations are so that we can best support him (as we would any child) has been a process. It is through that process that I have also discovered some things about myself.