Lois & Clark Forums Forums Fan Fiction Lois & Clark Fanfic FDK: The Diagnosis (1/1)

If you have any questions about autism or about raising a child who is severely affected by autism, I would be happy to do my best to answer them. My goal with this story, in addition to simply writing a prequel for Echolalia , was to write a story that proved both educational and entertaining. I hope I have succeeded.

As always, all feedback welcomed.

Joy,
Lynn

thank you for sharing your story. I don't take sides in the vaccine controversy but I have indeed seen improvements in spectrum children who have food allergies and then remove them from the diet. Have you read the book by Karyn Seroussi about her son's journey through an allergy-triggered?

hit post too soon....I meant to say "allergy-triggered reaction". here is the website:
http://www.autismndi.com/

What a beautiful story, Lynn. I can totally see Clark and Lois initially reacting this way.

I find it interesting that Clark thinks autism is hereditary as I've never heard that reasoning before. I had only heard it can happen to anyone, so why not the Kents? Usually happens around the second or third birthday, which is why so many people associated it with the vaccine shots (the scientist who originally made that corrolation though, came out in the past few years stating that he either falsified his data, or didn't use scientific procedure, or had some other flaws in his testing process and that there really isn't any proof that it came from the vaccines). I've also heard too much TV and Computer (screen) time blamed. Basically, you hold your breath as a parent until they turn 4, and love your child no matter what.

You moved me in tears by the end when Todd hugs Jerome. What a wonderful moment, and to have it shared with his brother will make it an even more powerful one for Jerome. It explains their close relationship in Echolalia.

Thank you for sharing your experiences with us in this way. I've been looking forward to this since you first mentioned the possibility of writing it, and you didn't disappoint. Of course, I've never been disappointed by a Lynn S.M. story so I guess that statement makes no sense.

I was confused at one point when they leave the doctor's office though:

You have Clark leaving twice. Is one of those supposed to be Todd?

Hello Joy,

Thanks for the pointer. I was already familiar with ANDi, but others might find it interesting.

I am not at all convinced that vaccines have contributed to my son's autism, and I have tried not to have Lois or Clark takes sides in the story itself. Having said that, I decided to include the bit about the vaccine in the story since the vaccine controversy is huge within the autism community, and since I have spoken with numerous parents whose kids followed Todd's path: Their children got a very high fever within hours after receiving a vaccine and immediately showed huge signs of regression and started to exhibit symptoms of autism which they had not previously shown. (I spoke to one mother for whom that had actually happened with two of her sons.)

I hasten to add that I am absolutely NOT anti-vaccination. However, if I were in a position to counsel a parent, I would *strongly* advise them to research both the benefits and the risks of vaccines so that they could make an educated decision, and if they should choose to have their child vaccinated, to seriously consider spreading the vaccines out rather than having multiple vaccines in a single visit. I would also encourage them to get mercury-free vaccines whenever possible.

I also recognize that when it comes to both the etiology of autism and the efficacy of individual therapies, there is plenty of room for honest disagreement, even among informed individuals.

Joy,
Lynn

p.s., I know I mentioned Andy's improvement after starting his GFCF (gluten-free, casein-free) diet. What I hadn't mentioned was that several months after he started the diet, he stole another child's (gluten containing) cracker and put it in his mouth. He didn't even chew or swallow it; he just sucked it for a second before an adult took it out of his mouth. He suffered a serious regression for the next week and a half. He lost all the progress he had gained with eye contact, with vocalizations, and with interacting with his environment; he basically returned to zombie-hood. The difference was major enough to be noticed and commented on by his therapists, among other people. (I had not mentioned the cracker incident to the therapists, so we had at least a single blind confirmation of the behavioral changes.) That was his most dramatic regression, but he has had others, as well, whenever he has had a dietary lapse. I realize that none of this proves the connection between diet and behavior (I am as familiar as the next guy is with the "post hoc ergo propter hoc" fallacy), that it is all just anecdotal. Still it's the best I can do, since I can't afford to wait until scientists manage to come up with and run double-blind studies or otherwise have more scientific proof.

Hello Virginia,

One of the few things that I think almost everyone agrees on is that autism is due at least partly to hereditary and partly to environmental causes; there is, however, fierce debate on the extent to which each contributes to its prevalence. Some children show obvious symptoms from the day they are born. (For example, they don't want to be held.) One of the reasons that autism is often referred to as "Autism Spectrum Disorder" is that children on the spectrum are so diverse in their symptoms, the age at which their symptoms first manifest, the severity of their symptoms, and quite possibly even the causes of their autism. (It has been speculated that autism may have a variety of different causes.)

re: Autism happening around the second or third birthday: That is often when it is diagnosed, but there are frequently earlier indications that the child is not developing in a typical fashion. (For example, the child doesn't imitate or point to objects.)

re: the doctor you mentioned: Dr. Wakefield is a highly controversial, and commonly discredited, figure who cited the MMR vaccine specifically. Other, more reputable, doctors support the hypothesis that the thimerosal (a form of mercury) which used to be in many vaccines and is still present in trace amounts in some (e.g., many flu vaccines), is what causes the insult to the immune system that eventually results in the child's manifestation of autism.

If you are interested in reading more about the controversy, the following two web sites are typical of the two sides:

The position of The Center for Disease Control is that vaccines are generally safe and that severe adverse reactions are rare.

According to its website, The Coalition for SafeMinds "was founded to raise awareness, support research, change policy and focus national attention on the growing evidence of a link between mercury and neurological disorders such as autism, attention deficit disorder, language delay and learning difficulties."

I am more grateful than I have words to say that at least the the older (1950s-1960s) view of autism being caused by "refrigerator mothers" has been universally discredited. I can't even begin to imagine the guilt those poor mothers of the time must have felt, on top of everything else they had to deal with.

So true!

Thank you! This story was truly a labor of love. I am so glad that it worked for you; I struggled with it for at least nine or ten months. (The story was definitely full-term.)

Eep! I can't believe I didn't catch it. It has been changed so that the first 'Clark' now reads 'Todd.' Thanks for pointing that out.

Thanks again,
Lynn

As the parent of a now grown kid who adamantly denies ever being on the Autistic Spectrum (but I have diagnoses in writing from more than 1 doctor so no matter what he says, I know different and so do his friends) - I can put in a word here. AS, in fact any developmental neurological issue, no doubt has multiple genetic and environmental progenitors. For some, a reaction to some compound common in vaccines, for others food sensitivities, in yet others, there may be no obvious trigger at all. Which is one reason it's now called 'Spectrum'. But with early recognition and intervention, some of the neurological damage can be mediated. The brain is a wonderfully adaptive organ.

Dandello,

Congratulations! If you have any tips on what you did to help your son make so much progress, I'm all ears. (My son has made tremendous progress since what I call his zombie days, but he is still very much on the autism spectrum.)

And I agree 100% with everything you wrote.

Joy,
Lynn

We were very very lucky to get a diagnosis of Pervasive Developmental Delays (which is a polite way of saying Autistic-Spectrum-but-we're-not-going-to-use-the-A-word) before he was 3 and excellent support from the local school district in getting him into a developmental preschool that had therapists who were excellent in bolstering his physical deficits - large and small motor control and speech. We watched his diet - no milk, little grain, mostly organic (and this was before organic went mainstream.) We were also lucky that his social deficits weren't severe so we had something to work with - actively teaching him how to recognize cues and respond in social situations, recognize his own emotional states, things like that. (One of his issues was that while other kids could pick up 'proper responses' from observation, frequently he'd make completely off assumptions about what was going on and base his responses from that.)

His later diagnosis was 'Aspergers Syndrome'

As I said, we were lucky. But mostly I think it's a matter of being the best advocate you know how to be and then some when interfacing with schools, doctors, and therapists and keeping at it, building on what works and keeping yourself educated on what the newest research is telling us concerning the neurological basis of the problem. One of the newest theories I've read indicates neuron over-growth and then prune-off in the brain (like what happens to the retinas of premies exposed to too much oxygen early on. The over-growth and die-off destroys the retinas.) So the amount and location of the prune-off may be the cause of the great variation of symptoms. And if the active sensory-filtering system that humans have is damaged, then you have sensory over-load into a brain that isn't designed to handle that type of sensory input. We're talking about things that probably would only show up in an MRI while it's happening.

Oh, and he claims he's not AS anymore - but he's never watched himself when he's frustrated and tired and growling at things.

Wow. Very powerful and moving story. I believe I remember having a conversation with you back when you wrote "Echolalia" a few months ago-- and all around I think you handled this perfectly. Lois and Clark's reactions to this were appropriate. I actually have a cousin with autism (who happens to be my same age) but I'm not all that familiar with him since they moved back east somewhere a long time ago and severed all contact with my family (let's just say there was abuse involved on multiple levels and leave it at that). My family (particularly on that side) has a long history of mental health issues, but there were definitely some "environmental" issues involved as well. I don't know that there is one direct cause of Autism (I think not). But from what I remember of my cousin, and what you've written here, it's a very close match. He was always happy and social when we were younger, loved music, etc. (much more likable than his older brother) and then he just started to change, and began struggling more with a lot of things. I wish I knew more of what happened to him, but I haven't seen him in probably twelve years at least. But your story at least gives me some hope that he's potentially made some progress and could be leading a happier life now.

Sorry if I got a little off topic. Once again, I'd like to emphasize how well done this piece was. Excellent job, Lynn. Thank you for sharing something that I know is so intensely personal with all of us here. We are grateful.

Dandello, your advice seems sound to me. Thanks for sharing!

Mouserocks, I'm sorry your family has had such difficulties; I'm glad my story provided some hope for you on your cousin's behalf. I firmly believe that there are interventions out there which will help any child to live a more fulfilling life. I also think that there is no one intervention that will work for all children; at this point, it is a matter of trial and error to find what will work for an individual. (Some interventions work for more kids than others.) And how much improvement may occur may well vary from child to child.

Barring a major miracle, my son will never have the ASD label removed from him. He probably will never live independently. (He's almost 11 years old and he still need help with the most basic of hygiene issues, for example.) But thanks to the hard work of his teachers, therapists, and doctors, and thanks to the various interventions I've been able to put into place and to do with him, he no longer spends his days just sitting still or wandering aimlessly and whining. He is able to use an iPad app to communicate some of his basic wishes. (He has several other edutainment apps he enjoys playing with, as well.) He enjoys modified games of chase, likes going for walks and swimming, and enjoys interacting with people. My thoughts about him are similar to what I had Clark think about Temple Grandin's life in my story: I would not want to live his life, but his life isn't mine to live. The important thing is that he seems quite happy with it.

I plan to do what I can to see that he develops whatever life skills he is capable of and to see that, to the extent he is able, he lives his life to the fullest. Mouserocks, if your cousin has people in his life that try to do the same for him, then you have reason to hope for him. And if my story has helped give you some hope, then it was well worth the effort to write.

Joy,
Lynn

Well done, Lynn.

I think the danger in writing a story so intensely personal is that it will read like a diary entry rather than a work of fiction. (Which is not necessarily a bad thing, if that's what you're trying to do.) You hit the balance really well - in my opinion, there's enough of you in there to give the story real feeling, but not so much of you that we couldn't easily identify with Lois and Clark.

It's also hard to write about something when you have so much information - the temptation is to push everything in 'because it's important', but failing to realise it might not be important to the story. I think you got that balance right, too.

Good job!

Corrina.

I agree with Female Hawk - the balance between the story itself and all the potential information - you hit it perfectly.

Corrina, thank you. You should have seen the first draft of this story; I fear it fell into the too-much-of-me trap. I have Anti-Kryptonite's comments and suggestions to thank for the better balance.

Corrina and Dandello, I'm pleased that you both think I was able to strike a good balance.

Joy,
Lynn

Excellent story Lynn. Informative and entertaining. I'm very pleased to hear the gluten-free diet seems to be helping your son.

Joan

Hi Joan,

Thanks for the feedback and the well wishes.

It really does boggle my mind, even now, how dramatic a difference the diet makes.

Joy,
Lynn

Lynn, I apologize for not giving feedback until now, but there were aspects of the story that brought back some painful memories of my childhood. I'm an Aspergers sufferer/patient/recipient/whatever, and when I get too tired or depressed I often flash back on those days. Then there are the times, like a few days ago at my doctor's office, when I can give someone some encouragement.

My diagnosis the other day was a kidney infection, and as I was checking out I noticed the lady behind the counter (not a nurse) reading a psychology book. I made a comment to show my interest, and she said that she was trying to learn more about autism because her daughter and son-in-law were in denial about their pre-teen son's diagnosis. There was no one behind me, so I asked for more details and she said it was Aspergers but she wasn't convinced. I told her I was too, and as I began to list some of the symptoms I showed as a child, every time her eyes got bigger and she nodded more energetically. As I left, I told her that if that was indeed the diagnosis, he would never get over it, but he would eventually learn to deal with it.

I made it clear that I was not a doctor and certainly wasn't a psychologist and there was no way I could make any kind of determination based on her observations, no matter how valid they might be. As I finally left, her face was brighter and she seemed to be in a better mood. Maybe seeing someone with that diagnosis (I hate the term "disorder" to be applied to Aspergers) who could function in adult society.

I didn't tell her that I still mis-read social situations at times and make some pretty horrible mistakes, that I'm still the world's worst party guest because I can't focus on anything due to the massive amount of unfocused sensory input, that I am still unable to make small talk with people without a definite subject on the table, or that when my parents sent me to the school psychologist around age seven (this was in the 1960's) I had no idea why, nor did I know what was going on. The diagnosis was not recognized at the time, and there are still doctors who don't accept it and want to label us as "high functioning" autistics.

I applaud all of the parents who work so very hard to help their autistic children. I did not get that support as a child, so I did some serious damage to my life before I found out that there was actually a medical reason I am the way I am and that I'm not really a damaged person.

Are you sure you weren't watching me instead?

Hi Terry,

Thank you for trusting all of us enough to discuss your experiences with us. I'm sorry you had such a rough time growing up, and also sorry that parts of the story brought back painful memories.

FWIW, although I have never officially had a label put on me, I *strongly* suspect I have Asperger's Syndrome myself. I know what you mean about small talk; I'd rather have my wisdom teeth yanked again than be put in a party situation with strangers and have to make conversation. Under the best of circumstances it is difficult, but when you throw in the sensory overload of all the competing conversations (not to mention the music that is often played too loudly, the claustrophobia that to me is inherent in crowds, all the movement, the stench of perfumes and possibly alcohol, etc.), I find such situations utter agony.

I, too, tend to misread social cues; I find it a lot easier to communicate online: Emoticons are a lot clearer than subtle facial movements or slight changes in intonation, not to mention that one has the luxury of processing at one's own pace what is written. Although I "get" sarcasm, figurative speech, etc. in person, it usually takes me a little longer than most people to process what is meant, since I first have to figure out and subsequently reject the literal meaning.

I recall with loathing my public school days. When I was a high school senior, for example, I learned to scarf down my lunch while walking in the hallway, and then to spend the rest of the lunch hour in the library, because if I went into the lunchroom, no matter what table I sat at, the result would be the same: The kids there would ask me if I *had* to sit there, if I couldn't go somewhere else. Then, after possibly teasing me for a few minutes, they would completely ignore me and talk amongst themselves. It happened ever single day I tried to eat in the cafeteria.

One of the things that draws me to Lois & Clark so much is the theme of the alien trying to pass himself off as human, and the pain and stress he experiences even when he seems to the outside world to be fitting in. I can relate. I can do a reasonable job of passing myself off as neurotypical, at least in short-term casual interactions, but the emotional and psychological toll it takes is high, and I find such social interactions stressful. It's ridiculous, I know, but I still get nervous doing something as simple as ordering food in a restaurant or speaking with a bank teller.

My high school had "senior superlatives," such as "most likely to succeed," or "best sense of humour." I won one such 'award': Most unique. I chose to take it as a compliment, but I know that it was intended as an insult. I was very much the 'oddball.' It was only decades later, after Andy was diagnosed and I started reading about autism, that I started to realize that all my oddities seemed to fall into place.

As I said, I haven't gone through the hoops necessary to get an official diagnosis, and I do manage to hold down a job (admittedly, I chose two fields that are highly structured -- computers and teaching), but I continue to struggle with areas that involve flexibility and non-structured social interactions.

If you ask anyone for whom I have beta read, they could tell you that my questions of their stories indicate that I often am unable to read between the lines in ways that other readers can. When I am just reading a story 'for fun,' I tend to fill in the blanks as best I can and let it go at that, but when I BR, I tend to ask the authors when I don't understand something, since I'm not sure whether the lack of understanding is just me or whether it is because the passage needs to be elaborated upon.

I've sometimes considered getting an official diagnosis, but I just don't have the time to do something like that at this stage in my life, since getting the label might satisfy my curiosity but probably would not yield any other benefits.

So if (childhood) misery loves company, may I join you? Too bad we didn't go to the same school; we might have wound up keeping each other company.

I hope your kidney infection clears up soon.

Thanks again for your post.

Joy,
Lynn

p.s., It sounds like you did indeed give hope to the lady behind the counter. I hope her daughter and son-in-law can put their denial behind them and get their son whatever help he needs.