Autism Vox

25 opinions for Stealth Autism

• Regan
  Jan 22, 2008 at 7:17 pm

  Hmmm. Reading the Herald, I’m not exactly sure that autism is a “disease”, either.
  I don’t think that it’s too improbable to assume that folks in general don’t pay too much to that which doesn’t affect them directly until it does, and then it seems to be everywhere, and you wondered how you missed it or is this all new?
  While I might not agree with some of Shirley’s imagery or details, I can relate that at the time that one seeks a diagnosis that there is some measure of concern, and sometimes considerable concern, otherwise, why else bother to seek a diagnosis? I realize that some might say there is a bandwagon effect, but we were trying to find out if there was a metabolic syndrome, brain tumor, undiagnosed seizure disorder, autism, or some other neurologic disorder…because it was a pretty significant behavioral change.
  Once the diagnosis happens…well, that’s something to digest and then decide what to do. What that is has changed over time in response to our particular slice of reality.

• Linda
  Jan 22, 2008 at 7:49 pm

  People miss the point that better diagnosis is a good thing. Autism has been around since the beginning of human kind; pages have been written by adults who endured years of Asbergers which was never diagnosed and only recently discovered.

  In the 70’s when Chapter 766 came along mandating education for everyone, any child who was “different” was seen as “emotionally disturbed” or “mentally retarded”. We didn’t have a clue.
  Fast spreading? Yes, understanding is indeed on the rise.

• Linda
  Jan 22, 2008 at 7:51 pm

  Asperger’s. I need spell check!!!

• Nicola
  Jan 22, 2008 at 8:37 pm

  I had to comment on this post, since I live in the Lexington, KY area. I appreciate the fact that some parents choose to focus on the positive things in life where their child’s autism is concerned.

  Let me share my story. My daughter is around 8 years old and began having problems around 3 years ago. Prior to starting Kindergarten, she was kicked out of two preschools. She has repeated kindergarten twice at two different schools, and my husband and I are now homeschooling her because none of the learning institutions around here have the appropriate facilities.

  She currently has a working diagnosis of Aspergers. We are aware that she needs Speech Therapy, ABA, Physical Therapy etc. However, we are currently unable to afford any of these therapies for her, which breaks our heart. Our insurance covers nothing. What we can pay for, psychiatrist and medicines is a great strain upon our finances. This is all in spite of my spouse’s relatively generous Professor’s salary.

  In my case, there is no joy associated with Asperger’s. If I could “cure” my child, I would do so immediately, without hesitation.

• Kristina Chew, PhD
  Jan 22, 2008 at 9:28 pm

  I was going to mention better diagnosis and more understanding as “spreading.”

  I used to think my son would have “obviously” and “automatically” been diagnosed with autism in previous generations. But now I am not so sure. His language is very limited and he struggles so much cognitively that I suspect his diagnosis would have been mental retardation and emotional/behavioral disorder (a friend has a 30-something brother who has these as his diagnosis; he does not have an autism diagnosis, but she has told me she thinks that might be likely today).

• HopefulNebula
  Jan 22, 2008 at 9:36 pm

  …Crap. Serves me right for not reading the paper today.

  Well, to the Letters to the Editor I go…

• Daisy
  Jan 22, 2008 at 10:29 pm

  You mean it’s not spread by sneezing? or by those forwarded email jokes?

• wskrz
  Jan 22, 2008 at 11:39 pm

  Daisy - no, it’s spread by those emails that tell you to “forward this email to ten people by the end of the day in order to get your wish!” That would explain how it “spreads” so quickly. ;-)

• KimJ
  Jan 22, 2008 at 11:47 pm

  Hi, I’m a member over at Wrong Planet and several people (maybe lots) have emailed her and complained. She communicated to one person that she didn’t choose the title and she doesn’t consider autism a “disease”. I don’t think she’s a journalist, just a grandma. I don’t care for her rhetoric and I accused her of plagiarism (copping cliches and stereotypes from the plethora of “first-hand” accounts). I think though, that she’s being inundated with complaints and hate mail for her lack of professionalism.

• HopefulNebula
  Jan 22, 2008 at 11:58 pm

  Oh, the poor poor lady, actually having to take the fall for the bulls*** she’s spouting…

• HopefulNebula
  Jan 23, 2008 at 12:12 am

  Nikola: I’m not a parent of an autistic person. I *AM* an autistic person.

  Does your child truly need all that? Or is it you who’s doing the needing?

• mayfly
  Jan 23, 2008 at 12:55 am

  HopefulNebula, do you actually think your comments to Nikola are helpful. Do you think she now sees your point of view. Are you actually against speech therapy? Are you against physical therapy? Are you against all things palliative?

  Nikola is asking for understanding. Why not present your views in a compassionate way. You seem full of hate.

• HopefulNebula
  Jan 23, 2008 at 1:12 am

  Sorry if you wanted light and fluffy. But my life is absolutely full of people telling me that I shouldn’t exist, and quite frankly I’m sick of it. I’m not against therapy. Occupational therapy saved me. I’m against the mentality that every single therapy is always needed, which is generally what underlies what people say about the “tragedy” of autism. That kind of mentality leads to places like the Judge Rotenberg Center. It doesn’t lead anywhere good or helpful.

  Speech therapy, for instance. Communication doesn’t have to be speech to be valid. But a lot of people don’t see it that way. And I’m sick of it. Any “hatred” I feel is more along the lines of righteous anger.

  (Also, my “poor, poor lady” comment was directed to the writer of the original op-ed piece.)

• Kristina Chew, PhD
  Jan 23, 2008 at 1:38 am

  We’ve done ABA and speech therapy, OT, piano, swimming……. it’s with more than a bit of relief that we’ve settled on “education” as the focus for Charlie. Therapies—and this includes school too—have worked best for Charlie when teachers and therapists draw from whatever is needed to best teach him. (And everyone seems to draw on OT and sensory processing.)

  @HopefulNebula,
  Charlie’s made me even more aware of how limited actual speech and language are in communicating—-a lot of his and my communication is definitely non-verbal.

  @Daisy, wskrz,

  not those “please forward” or “Dear Madam” emails! The SPAM filter overfloweth…..

  @Nicola,

  I hear more and more of families deciding to home school—-not the right choice for my son —have you seen this blog by a mother, Marla Baltes, in Indiana? She’s currently homeschooling her daughter. Insurance covers the “big stuff” (neurologist) for Charlie but not the dentist (because we take him to a particular dentist who specializes in special needs kids) and much else. — I hope this sounds all right—I hope things are going well/better for your daughter?

• mayfly
  Jan 23, 2008 at 2:03 am

  Nikola, I am the father of a non-verbal, barely able to communicate severelyautistic daughter who has had me wrapped around her little finger since the day she was born.

  Yes, I worry about her future and what will happen when her mother and I can no longer care for her, but that doesn’t enter our daily lives. She has a smile which brightens the gloomiest day. Yes she tantrums, yes she’s nearly impossible to teach, and no I don’t see anything positive about her autism.

  I do see her as a precious gift. Just the other day she brought me a tin of candies to open, I did it for her then showed her how to do it herself. She failed, but the breakthrough was that she tried what I demonstrated to her. She’ll be 11 this year, and much of the world would pity her inability to open the tin. I celebrate her efforts.

  Seek help for your daughter’s disabilities, but do not dwell on them. It can only negatively impact your love for your daughter.

  I’m a bit confused. You state that your husband is a professor, and I’ll assume at the U. of Kentucky. I checked the benefits, and while out-patient mental health visits are not covered in full, they are subsidized by various plans. Prescription drug copayments look to be $20.00 What about your child’s therapy is causing such a financial strain.

  Does your child have problems beyond her Asperger’s? What type of physical therapy does she need. Also what exactly is missing from the schools in Lexington that they cannot provide for her education? What happened at her last IEP? Do the services not exist, or was she denied them? If the latter why?

  Continue to show your daughter all the love you have for her. Be there for her, she needs you more than she can fathom. She needs your husband too. Your journey is not what you expected. It is one which will build your character. It is one which will reward you greatly, if you let it.

  Hang in there. Make sure you do not neglect your husband, nor he you. But most all your make sure your daughter never has reason to doubt your love for her.

• nicola
  Jan 23, 2008 at 1:52 pm

  Our Psychiatrist is covered by our insurance provider, however we choose to pay for her services out of pocket because we feel she is the best in her field. Her main medication is not covered by our insurance, either. She is currently undergoing an extensive evaluation out of state. Even though our insurance will cover some of this, the out of pocket expenses will probably run into the thousands.

  Our last experience with a public elementary was a nightmare. The school called us two or three times a week because they were unable to cope with our daughter’s violent tantrums. Needless to say, she is emotionally scarred from the “time out” room. The IEP was wholly inadequate, and only specified one hour of OT a month. We were advised to employ an educational advocate, but at a cost of $90 an hour we were unable to avail ourselves of this luxury. We would love to have her back in school, but my husband and I feel like we have exhausted all of our options with our particular school district.

  My husband (X)is an assistant professor at a local university. It is not UK, by the way, but I do not wish to disclose the location, for obvious reasons. X was recently denied tenure on the grounds that he did not have enough research. X was, technically, one journal article short even though he has two in the pipeline. He was unable to complete his research because the situation with our daughter intensified radically during the last six months of the tenure process. Though I do not work in X’s field, he tells me his academic career has essentially been destroyed because of this situation.

  Finally, I wish to say, that like all parents, I love my daughter more than anything in the world. I do not believe that anyone is “less” of a person because of an Aspergers or Autism diagnosis. Because of her problems, my daughter has been denied all of the normal childhood pleasures like sleep-overs and girl scouts. She is conscious of the fact that no one wants to play with her, and has no real friends her own age. As her parent, I would do anything within my power to erase this pain.

  I read this blog regularly because I feel strongly that vaccines have nothing to do with my daughter’s condition and it is the best source of information that I have come across so far. So, thank you, Professor Chew, and please keep up the good work. Your posts are very inspiring.

• Emily
  Jan 23, 2008 at 2:53 pm

  Nicola, this is probably going to come off as sounding condescending, but it’s sincere:

  Unless your husband plans to stay where you are in spite of not getting tenure, this might be a time to look at places where the public schools have solid, ongoing, professional programs for children on the spectrum. We’re in just one of those districts, and I think Kristina is, too (across the country from each other). This may be completely untenable, but it’s one possible way to see that closed tenure door as an open window for your family’s future. And it might help you and your husband not to unwillingly view your daughter as an obstacle to your personal advancement. What doesn’t qualify a person for tenure in some places is just fine in others, as you probably know. If his teaching’s good, there are places that would be glad to have him and give him tenure credit earned.

  And there are many kinds of pleasures. I did none of the things you describe as “normal childhood pleasures,” probably because of my own status with “issues.” Thus, I forged my own set of pleasures and honestly, even then I knew that it was a different but possibly more interesting path that I was following. Your daughter, if her dx is Asperger’s, presumably has at least average intelligence, and she may be able to intellectualize these things.

  Kids on the spectrum often “click” with other kids on the spectrum. Can you seek out camps or playgroups or ANY opportunities like that for her to find friends or at least someone for parallel play?

  My penultimate comment is this: If an IEP is inadequate, raise hell until they produce one that is adequate. These are your rights, and more important, they’re her rights, and when they learn that parents know their rights and will demand them, they generally will capitulate. My school district knows exactly how far I’m willing to go and how fast I’ll go there if they don’t do what is necessary for our son (dx, Asperger’s).

  My final comment is this: It sounds like you and your husband really need a support network. I strongly encourage pursuing any avenues available for that, from the group of parents who post and comment in this “circle of blogs” to groups in your area (craigslist? OASIS? some resources out there for that), etc. Reach out and talk and exchange ideas and ask for help and get support whenever you need it. I think it’s so important not to be alone–as a family, not just as a person–in this. That way, you, your husband, and probably most important, your daughter, will know that you are NOT the only ones in your boat.

  Again, sorry if this seems patronizing, but your comments here strike a familiar cord, probably with many of us.
  E

• nicola
  Jan 23, 2008 at 3:21 pm

  Emily, I must stress that my husband and I not perceive our daughter’s condition to be an obstacle to personal advancement. I apologize if I did not make that clear. Lack of tenure means that the job is gone as of next year. If he is forced to claim unemployment, our situation will be even worse b/c the insurance, as crappy as it is, will be gone. Given his specialty, the nature of his Ph.D, and the state of the economy it will be very difficult for him to find another teaching post anywhere. Believe me, we would both work at Mc Donalds if it would enable us to provide more services for our daughter.

  No, I do not consider your comments to be patronizing or condescending. Thanks for your feedback.

• Emily
  Jan 23, 2008 at 3:34 pm

  I know about the tenure thing. I walked away from a tenure-track job (sigh. a really really good one, big lab, research $$), and I did it so that our son could be in an excellent school district. I’d do it again in a nanosecond. And I’m very sorry that he didn’t get tenure–that is simply devastating, I know. I did not infer from your comments that you perceive your daughter to be an obstacle, but her needs during those last six months of his tenure struggle trumped his needs, and that’s how it should be. But I imagine that it is difficult not to remember the reasons that tenure did not come through, no matter how righteous those reasons are. The only and greatest comfort can be in knowing that we do these things for our children.

  It is my understanding that sometimes, in a crushed economy, education suddenly becomes important as people seek to expand their job skills. That’s why I mentioned teaching skills. If they’re there, they can be invaluable. I know this from personal experience.

  He also should be entitled to 18 months of COBRA. With the year he has left and those 18 months, that’s over two years. Lots may happen with the economy in that period.

  Anyway, I am sorry about the tenure thing. Good people get screwed out of tenure, sometimes for the most idiotic reasons. It’s infuriating.

• Kristina Chew, PhD
  Jan 23, 2008 at 5:42 pm

  @nicola,

  first, just thank you for your too kind words. thank you.

  I am up for tenure myself this year; won’t know till June. It was just last year—partially from writing online—that I was able to return to academic writing, though I’ve always struggled to “fit” myself into an academic field. (I have an undergraduate degree in Classics and a doctorate in Comparative Literature, with a focus on lyric poetry and literary theory.) Like Emily, I resigned from a tenure-track job; the job was in St. Paul, my husband had a tenured job in St. Louis, and there was no way we could commute and take care of Charlie. At that point in Charlie’s life—-he was a preschooler—it meant a lot to me to be able to be home and to, as it were, reschool myself in ABA, VB, speech therapy. We moved back to New Jersey so that Charlie could go to school here, with one one-semester job between us. I worked in non tenure-track positions until getting my current job.

  I’m really thinking of your husband and you and your family—wish I could help more. When you write “he tells me his academic career has essentially been destroyed because of this situation.”—-our situation has not been exactly the same, but I know too well what you mean—-

• Emily
  Jan 24, 2008 at 12:01 am

  Kristina, good luck next year. You’re amazingly lucky even to be on the tenure track with a comp lit degree. The humanities are tough. My mom is a medievalist (Old French, Latin, Ibero-Romance Linguistics, that kind of thing–she’s comfortably tenured), so I hear about how hard it is out there from her.

• Kristina Chew, PhD
  Jan 24, 2008 at 12:06 am

  If I had to do it again (positively zero chance) I would have, “should” have just stayed in Classics!

• mayfly
  Jan 24, 2008 at 9:37 pm

  Nicola, it may be counterintuitive, but because my daugther is very low-functioning, I doubt whether she cares at all about her condition or her lack of friends. Any pain over her autism in our family inflicts us not her.

  I think you need to concentrate on building your daughter up, Improving her self-worth. I Googled ‘”autism camps” Kentucky’ and came up with a few hits. Perhaps one of these would be suitable.

  You and your husband do need a support group. My wife and I were lucky enough to meet someone from a church with programs for special needs children. They have become a big part of our lives, sometimes I think too big, but I know my daughter will never be turned away from any of their events, nor the homes of the people who attend.

  Do what you can do to mitigate your daughter’s condition, but make sure SHE knows she is not a lesser person because of her autism.

  I think your daughter might benefit greatly from speaking with some autistic adults.

• Natural Killer Cells and the Search for Biomarkers for Autism
  Jan 26, 2008 at 5:19 pm

  […] environment “triggers” autism making something of this research about something like stealth autism getting into the genes of some children and causing an “infection” in a pregnant mother […]

• Niksmom
  Jan 27, 2008 at 2:47 pm

  Not sure how I missed this post this week, but here I go jumping into the fray.

  @HopefulNebula’s comment re: speech therapy I just wanted to point out (and acknowledge that it may be very different insome areas of the country) that ALL communication-related therapies generally come under the auspices of “speech” therapy. Not the best umbrella term, I’ll conceded, but it does also include the sorts of therapy my son is currently receiving which is NOT at all focused on the sounds of speaking but on the ability to understand language and to find means of communicating his needs and desires. My son has NO speech at all but can communicate very well in many cases; the speech therapy also includes evals for augmentative communication devices.

  @Nicola, I hope you are able to find the supports in your area (and online) to find solutions to many of the issues you raised. You may already be familiar with some of these sites but I find them helpful in learning more about what’s happening in my georaphic area (http://autismbulletin.blogspot.com/) and this one for special ed laws and advice (www.wrightslaw.com).

  We, too, took our child out of school just this fall. (You can learn more about him/us at http://maternal-instincts.blogspost.com) We didn’t have it in us to fight the battle royale that we would have had to fight with the school to get an honest to goodness APPROPRIATE IEP for Nik. We may need to do that one day but not yet.

  I wish you well.

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