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Autism and Parental Obsession: A Troublesome Mix

By March 4, 2009

Note: The live links in the first paragraph of this blog will take you to full reviews of each book.

Over the past two weeks, I've read two really well-written memoirs about raising a child with autism. One, Unraveling the Mystery of Autism by Karyn Serousi, was written several years ago. The other, A Child's Journey Out of Autism, came out just this week. While both are literate, gripping memoirs, I found both very disturbing.

Certainly, it's possible to take issue with the books' recommendations for treating autism - since both authors are devotees of the DAN! protocol, a controversial biomedical approach to autism treatment. And it's possible to worry that the lists of specific supplements and pharmaceuticals included in both books could substitute for medical advice for some parents.

But what really troubled me about both of these books is the obsessive nature of each author's focus on her child's autism - and the assumption, on the part of both authors, that all parents should be equally obsessed. In both books, in fact, the word "obsession" is used over and over again. In both books, the authors make it clear that they are willing to do anything, spend anything, sacrifice anything in hopes of a cure. Both authors include anecdotes in their books which make it clear that they are horrified by parents who are unwilling to follow in their footsteps.

Of course, any good parent will seek appropriate treatments for their child with autism. But the culture of obsession has become almost a norm in the autism world. Rather than balancing care of an autistic child with financial concerns, relationships, and the needs of other siblings, parents are urged to drop all other interests in favor of pursuing anything and everything for their child with autism. And the message of both these memoirs is "if you follow me, you will cure your child."

Not only is it fiscally, personally and physically dangerous to become obsessive about autism treatments, but the the promise of a cure is disingenuous. The probability of a child with autism being literally cured is astronomically small (though of course symptoms can lessen and all children gain new skills). By playing on parents guilt and anxiety, though, it's not too hard to push families to the brink of financial, physical and personal collapse.

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Comments
March 4, 2009 at 11:59 am
(1) Tammy Lessick says:

I agree. There are so many treatments out there, and we have tried a lot, but sometimes enough is enough. There are things I would love to try, but can not afford. My family is already in debt because I have to stay at home and take care of everyone. I do what I can and love my son for who he is. He is constantly changing and works hard to learn and overcome difficult tasks. I must be doing something right.

March 4, 2009 at 12:06 pm
(2) Nianya says:

An autism diagnosis inevitable triggers the 4 stages of grief. I suggest waiting for awhile after you reach acceptance before deciding on a specific plan; What you need before then is alot of support.

March 4, 2009 at 12:16 pm
(3) Cait. says:

Nianya, I agree whole heartedly!!! Unfortunately the best advise is often the hardest to follow. After the diagnosis, the feeling to DO SOMETHING, DO ANYTHING is so strong that it is really hard to make rational choices.

March 4, 2009 at 1:44 pm
(4) Sandy says:

I was thinking on writing a book myself, describing when my child was diagnosed and the things I chose for him. I was thinking of going through all his steps and developments. My book would probably be boring since I didn’t choose many unheard of things, I didn’t see over night improvements with autism and in the end so far, I haven’t seen a cure but I think it still may be an interesting book.

The thing with books is it was ‘my’ story and how ‘my’ child reacted and progressed with what I chose for him. I hear many personal stories all day long and I tell mine without it having to be in book form. Not all parents want to hear my boring story, nor do I want to read all the time about a cured child when I know mine isn’t and that is not my focus.

Part of having autism is accepting that child does have autism. I would do anything for my child that showed the medical need for it, but otherwise I would not live in a card board box in order to achieve that. If what some one is looking for is a cure, no matter what it is they want to cure, those people will strive at all costs for that. A percentage of the autism community strives for that, and another percentage strives for acceptance of ones self and is not so obsessive. But when some one buys a book based on their own strive, they always have to remember that is their story and your own child has their own story. Alot of people read books to gain their hope through another child’s progress, which is natural to do. One has to realize hope comes in many forms, and alo tof times it didn’t come from a book at all.

March 4, 2009 at 2:14 pm
(5) Codysmom says:

I confess that i have been on this path and i even have one of those books. I Think speaking from exserence when you first here your child has Autism All you can think about is the worsed possible out come . In my sons case thats what i was told to exspect that he wouldnt never be a perductive memeber of the community So for awhile i was desprate find anything that would help him . I looked into the gfcf diet He would rather die then eat that stuff so we dont bother we looked into MB12 but i cant even imagine trying to give that 140lbs 11 yr old shots everyday he would FREAK and the other option was way to risky because while it would remove his mercury it would also remove things he needed to live I guess at some point in all this i saw that he was getting better with Speech Ot PT social skills training That i got to thinking I love the boy he is and while i am scared to death to leave him in this world without me one day I dont think i would change now the young man he is becoming He is funny Brutaly honest and loving and very brite Who could ask for more in a son

ps Codys story is in the first 2 pages of the book thats life with Autism

March 4, 2009 at 8:09 pm
(6) Carole Rutherford says:

Speaking of books I wonder what you feel about this one Lisa I Wish My Kids Had Cancer, A Family Surviving the Autism Epidemic written by Michael Alan. I do not believe that it is good for anyone to become totally obsessed with our autistic children because by becoming obsessed I believe that we are in part denying them the chance to breath as the person they are. Not saying that we do not all want the best for our children because we do. I have not read the book written by Michael Alan and that probably means that I have no right to comment on it however if becoming obsessed with our children is not good for us then what of writing a book on the backs of other parents who are suffering dreadfully is morally wrong if nothing else. Surely the the autism community can not be happy with someone who gives such a title to a book in the name of raising awareness of this condition? I have spent years raising awareness but I feel that this is over stepping that mark by a mile. Maybe the book is brilliant – there are those who say that it is. My opinion is that the title was probably chosen as a marketing tool for the book which makes it even more distasteful for me.

March 4, 2009 at 8:41 pm
(7) autism says:

Hi, Carole – welcome back! I had never heard of that book, and can’t comment on it, except to say that the title certainly hit me off guard.

My guess is that it would anger parents of children with cancer as much as those of kids with autism!

Lisa

March 5, 2009 at 12:03 am
(8) Pat says:

As a dad of a kid on the spectrum, I must admit I’ve read most of these books over the years, including this one that Lisa reviews (by Whiffen, not the one by Serousi – by the way, I think commenting on two books as though they are one is as amateur as reviewing Dark Knight and Hulk movies at the same time). I loved the one by Maurice, and loathed the ones by Adams and McCarthy. I wasn’t sure what to expect with this one, but I was really surprised at how well it was written, how honest she is, and how well she describes the feelings of so many in the autism community – even her own feelings of guilt.

I think this review is way off base. I’ve recommended the book to several friends and family (with and without kids on the spectrum – always trying to boost understanding), who have already read it and loved it too. I’ve got to go back to my high school debate days and point out false statements here. Lisa (reviewer) says the author thinks all should be equally obsessed, and if you follow me you will cure your child … um, what pages were those on? I didn’t read that anywhere, and that was totally different than the book message I read. If someone makes strong, negative statements like those, you’ve got to quote from the book (I can’t find them anywhere).

Here are a couple excerpts that prove my point – “One minute I’m energized and happy, and the next I remember my friends and feel guilty … Why can’t all of them have this same outcome? Is it okay to be happy that my son is back?” (page 255), and “And we are extremely lucky with the outcome we’ve had. What if we had another child with autism … and the child didn’t progress like Clay has?” (page 264). Hope the publisher or author doesn’t try and come after me for posting those, but there are lots of others where I felt the author clearly feels she was lucky, doesn’t know why her kid turned out this way (although I do – since almost half of the kids who do Lovaas ABA have this outcome), and wishes it for everyone else – even though she expresses frustration that all don’t turn out the same.

I also didn’t feel like she didn’t accept her kid for who he was. Those of us with a kid born this way look at things differently. Her kid was “normal” for a year and a half until he lost words, etc, and gained autistic traits. That’s a totally different world – a lot of us don’t understand, but I’d equate it to seeing your child get the flu (not even close, but the closest I can imagine – was healthy, is now “sick”). If I saw that, I’d work to make them better too, and so would you.

I guess we’ve all got different opinions and experiences, but I just think Lisa had a few too many martinis before writing this review – because her opinion does not reflect the facts. I’d say read it for yourself to get the story straight.

Gettin’ ready for April awareness!

March 5, 2009 at 4:14 am
(9) Susan Gallagher says:

Pat – nicely referenced, no one will be coming after you :)

I have read a few books and they just make me cry…….and I dont just read books I read peer-reviewed journal articles written by scholars in the scientific and education communities. On the flipside, the more I read the more I realize how damn lucky I am!

My daughter has late onset autism so I did have a wonderfully developing child until she was about 2 1/2 years old. I ran around screaming that I had birthed a genius. She walked early, she talked early and she understood that mummy and daddy had different words for the same things (English ones and Japanese ones) she was popular and funny, kind and obedient. Yes it was heartbreaking…I tried desperately to take the blame. Her dad and I were having a lot of problems and I hadnt recovered from my brother’s suicide and my Dad was diagnosed with cancer and I was absent. Hubby was emotionally unavailable and frosty made twice as bad because I was living in his country without my family and friends. I didnt really think anything was wrong as our daughter was super smart and loving. So when the school complained that she didnt sit still in music class (how cruel is that? fill a room with noise makers but dont let the kids touch them!)and that she would rather water plants at lunchtime than hang with the kids I just put it down to the fact that she was my kid and must have gotten all the independent genes from me. Anyway I told them just let her be her, that she ate heaps at home so no need to force feed her and maybe she had a green thumb……..well they wouldnt have a bar of that! She would toe the line or not be welcome back so eventually I told them to stick their bloody school.

The marriage got worse and worse and I was miserable. She hated going to school. I called myself unloving and emotionally unavailable. I told myself it would all be ok when I got her home with my family and friends and I would be happy and she would be ok…….the truth is I was neither unloving or unavailable. I carried her with me every where I went for her first two years. We slept together, we ate together and she was often just on the computer when I was teaching English at home unless I got her a couple of hours at daycare place for socialization. We couldnt have been closer. She wiped my tears away once or twice on very bad days and I was convinced. I wanted to be a bad mum. I wanted it to be my fault.

Because if it was my fault and I had “broken” her than by god I could and bloody well would “fix” her.

Ha ha she does what she wants in her time and doesnt really pay much mind to what I want. She doesnt have any desire to be a cheerleader, champion debater and go to every party that is ever thrown while she is in school. That was me. She is not me. And you know what………..thank goodness for that!

March 5, 2009 at 5:49 am
(10) Harold L Doherty says:

Lisa

With all respect, parents of autistic children have many challenges to deal with as they try to do the best for their children. They do not need to be attacked by other parents for doing what they consider best.

I have long advocated for ABA services for autistic pre-schoolers and students here in New Brunswick Canada, with some degree of success (along with many other parents).

But I do not criticize, judge or presume to be more knowledgeable than other parents of autistic children who choose different paths for their children.

March 5, 2009 at 7:28 am
(11) Lisa says:

Pat – this blog post is not a review. To find the actual long, full reviews (with citations), click on the live links ON the blog. You’ll see the detailed explanation of EXACTLY what I’m talking about in each separate book.

And Harold, the point is not that parents make particular choices for their children’s treatment. The issue that disturbs me is (as I actually said in the blog) the way in which the choices become not just ABA, or DAN, or Floortime – but all of the above, all at once, at any cost.

Take a look at the Whiffen book, and you’ll see that the parents set up a very expensive ABA program right off the bat. But that’s only the very first step – and here, for example, is the snippet from the book that I cite in the review (this is from a point at which the author is at an autism conference):

“Most of us have put our lives on hold to help our kids. Many successful careers have ended, friends have been lost, bankruptcy and other financial woes crept in, hearts were broken, and dreams were shattered. But we know we have each other, the club, and we have hope. And our hope is made stronger when we hope together.”

By joining this parents’ club, it’s implied, you sacrifice everything. But that’s what membership requires.

Lisa

March 5, 2009 at 8:54 am
(12) Pat says:

Lisa – thanks so much for the reply. You’re right, I didn’t see the full review – thanks for pointing it out. After now reading it, I’ll say we’ll have to agree to disagree. I’ve gone to movies and plays with people where I loved it and they hated it, or vice versa. I think our opinions in life are shaped by our personal experiences, and I think you must have had some negative experiences with some parents or other people affected by ASD that has tainted your view. Clearly your glass is shaded far differently than mine.

Don’t fault the author for having a good outcome, or that as a young mother she felt her child was near perfect (who doesn’t) – it just makes you sound spiteful. And I never read any hard feelings from the author towards others regarding their personal path choice, just praise (the quote you cite) for those dedicated people who have given up much in the name of their kids. That just happens to be the group setting she was at. I’ve never been to one of those, but I imagine she would have praised those of us who are hardly doing anything but share our compassion of torn wallpaper and poop-stained sheets while trying to smile our way to work each day. Her praise of other people shows sincere admiration and humility – IMHO.

The authors perspective on vaccines seems to be one of confusion – sounds like the rest of us (except those fringe ones who shout on CNN). From her pediatrician experience, I mostly took away the ignorance of a pediatrician who said the kid didn’t have problems. From my experience, pacifying a parent with “he’ll be fine”, or “he’ll grow out of it” (as you suggest could have happened) makes everything worse for the rest of us. We need doctors to be smart and recognize the signs. We need doctors and parents to stop thinking kids will grow out of it – this is a real disorder. I’ve met so many non-autistic parents and doctors who don’t think autism is real. Thus, they don’t think anything needs to be done to help find a cause and proven treatments – let alone coverage for treatments. This is the worst scenario for all of us. My kid will never grow out of his disorder, and will forever be limited because of it. Don’t demean him, or my pains, or the disorder further by suggesting a kid will simply grow out of it in time. This author doesn’t know exactly what treatment led to the best result – but that’s the point. If you could determine that yourself, you’d make a fortune, and help so many people along the way. Just be careful of how negatively you approach people and things in life – or nothing will taste as sweet or be as pleasant for you.

March 5, 2009 at 9:06 am
(13) autism says:

Pat – you’re probably right that I’m a bit jaded.

I’ve now read over a dozen memoirs with exactly the same story arc – perfect child, devastating diagnosis, parent obsessed with cure, positive (or reasonably positive) outcome for the child with the assumption that the obsession was the key to the child’s outcome.

In this particular book, btw, the child’s issues apparently came about months after the vaccination that the mom (Whiffen) believes to be the cause of her son’s autism. The doctor’s comments to which she was referring were about the safety of the MMR – not about Clay’s development.

The other thing that “colors” my perception, too, is my experience with my own son. I tried many different therapies, and sometimes saw what looked like related advances. I stopped most therapies, and CONTINUED to see similar advances. Today, we see advances all the time – which I attribute to (1) Tom being willing to try hard; (2) lots of good 1:1 time from mom and dad; (3) a great speech therapist – an hour a week; (4) growing up.

Seeing this in my own son, I can’t help but wonder whether the all-or-nothing, throw anything and everything at the problem approach to autism treatment is in any way a positive thing.

I saw a review of this book which suggested that Clay was progressively “slipping away,” and if not for his mom’s grit and determination he would somehow have disappeared. In fact, that simply doesn’t happen. Autism isn’t degenerative, it isn’t fatal, and almost all kids DO progress.

The level of drama and the sense of “all or nothing, do or die” makes sense for a Lorenzo’s Oil scenario. But since the probability of a “cure” for autism through existing therapies is extremely low, it makes no sense to me to throw everything you’ve got at the problem. The likelihood of actually “solving” the problem is very, very slight indeed.

Lisa

March 5, 2009 at 9:35 am
(14) Deb says:

This is exactly why I am nervous about insurance mandates for Autism Treatment. I have tried many and I am honestly not sure what made the difference. Perhaps time and maturity for my son. I guess I do obsess, but it is how to engage him, explaining social situations, etc. I never stop thinking about how to teach him. Also, I have seen many “experts” charge exhorbitant amounts for “treatment” that in retrospect I find hilarious.

March 5, 2009 at 10:15 am
(15) AutismNewsBeat says:

“I have not read the book written by Michael Alan and that probably means that I have no right to comment on it…”

Any book that assumes “autism epidemic” in the title is worthy of a comment or two, although probably best left on the shelf.

March 5, 2009 at 12:56 pm
(16) Knitty says:

What troubles me about these memoirs is that they don’t take into account all the parents who also did “anything and everything” and didn’t wind up with a “positive outcome.” A good friend of mine has lived this exact scenario — every form of therapy, every kind of medication, every suggestion from every quack and now her child in a teen living in a institution and she’s bankrupt and living with her parents, having lost her home years ago. Absolutely nothing “cured” her son’s autism, which shouldn’t be a shock to anyone because there is no cure for autism. It isn’t simply a matter of parents being “obsessed enough,” there simply isn’t a cure. I strongly suspect that children who recover after one form of treatment or another didn’t have autism to begin with.

My husband just ordered a movie about a child who “recovered” due to his parents putting him on a 40-hour-per-week ABA program. I haven’t watched it yet, and frankly I’m dreading it. We can’t afford 40 hours a week of ABA — not if we sold the house, not if we both worked two jobs. In our area, 40 hours/week of ABA would cost around 300K a year. For most people, it simply can’t be done.

I loath the implication that parents who aren’t able to cure their child’s autism simply aren’t obsessed enough or didn’t sacrifice enough.

March 5, 2009 at 1:12 pm
(17) AutismNewsBeat says:

The saddest part about the autism cure industry is the number it does on a child’s head. How do you offer acceptance and accommodation to a kid while telling him he’s mercury poisoned? And how is a teenage supposed to react when he’s led to believe that despite mom and dad’s best efforts, the cure didn’t work? It’s bad enough when generation upon generation of black children abandon hope, overwhelmed by social prejudice and misunderstanding. Do we really need to go down that same road with children who have autism?

March 5, 2009 at 1:21 pm
(18) jen says:

What scares me about this obsession by moms and dads is that they are not doing their kids any favors by going into debt. In their try everything mentality, maybe they’re forgetting that they can help their kids by doing things at home themselves. We had early intervention and then therapies through school, but I’m convinced that our boy wouldn’t have done any better (he’s actually doing VERY well) with expensive ABAs and the like. We let the school, and soon the county too, do their job, and we do our job of helping him understand the world because WE ARE HIS PARENTS. That being said- we make sure we have our own activities. It’s ABSOLUTELY necessary that parents have some time to themselves with out children, with or without each other even, because without this mental break it just causes more stress in the home- again, doing no service to the child. Without my husband’s volleyball schedule and my chorale participation we would have nothing else but pdd-nos/hyperlexia. Not a healthy way to live.

March 5, 2009 at 1:35 pm
(19) Sandy says:

Children don’t recover with the use of ABA. Any one promoting that is faslely making a statement. Why is it when people watched the movie Miracle Run, that they did not see those boys still had autism, but were quite able? You know why? It wasn’t a movie that tugged at heart strings for a cure. When people read books or watch movies, they have to realize it is their story they are protraying thats being read, not yours. When people write books they should put a disclaimer on it that it is their story and not medical advice. Recovery and cure should never be used in such books or movies. There is no way one can say two kids will exactly respond the same with the exact same interventions. That’s what many forget, end up living in a card board box and spent so much time on a cure or recovery they forgot to work on the abilities the child always had.

There needs to be a book called “there is no cure, there is however progression”

Mandates for autism insurance covers only some things, but not all intervention choices that are out there, plus they added spending caps on it. You’re also going to have
co-payments.

I would also have to agree, trying everything under the sun would do a number on the child, more so depending on what was tried. It could also do more damage than good.

March 5, 2009 at 5:16 pm
(20) Justme says:

Lisa,

I find you extremely opinionated and arrogant. Any parent that doesn’t think like you is obsessed or something else. At this point, I’m deleting you from my RSS because I’ve read so many attacks on parents that are just trying to do their best for their kids that I just feel nauseated. In my opinion you are going directly to Paul Offit’s side and I had it…

Just me

March 5, 2009 at 5:29 pm
(21) Pat says:

Sandy – I’ve also heard of some people who still believe the earth is flat.

The research is so prevalent and proven to substantiate ABA (www.thelovaascenter.org/methodology.html, or just search Lovaas research), in addition to recommendations from both the U.S. Surgeon General and the American Academy of Pediatrics, I’d educate yourself before making such statements. 47% recover (definition of recover is “to make up, regain, or reclaim something that was lost or damaged, or to be restored to health”, which is eerily similar to the definition of cure {restoring to health, or correcting something that is detrimental}). If a kid was “not normal” and then becomes “normal” (indistinguishable, as the 47% who do ABA), then that certainly fits the definition … even if it doesn’t fit your personal opinion.

Personally, my kid is in the other 42% range who still need assistance, but have made significant gains. I’d love insurance coverage, since most efforts would cover ABA, floor time, occupational and speech therapy, etc. That’s a good range in my book. Caps and co-pays are par for the course in trying to right a misguided ship that discriminates against our kids.

Yes, all kids respond differently – just like all cancer patients, etc, etc. Doesn’t make it any less of a medical science. Isn’t that why we use the puzzle piece as our official logo …

March 5, 2009 at 5:32 pm
(22) autism says:

Just Me – of course you have no obligation to continue to read my blog!

But I would like to note that “going to Paul Offit’s side” (by which I understand you to be saying “insisting that there’s no autism/vaccine link”) has nothing to do with what this blog is saying. In fact, there’s nothing in this blog about what does or doesn’t cause autism.

The point of the blog is to say – and I will certainly continue to say – that seeking treatments for autism should NEVER involve destroying a family’s financial, physical or emotional health. If that is happening to your family, I would very strongly recommend taking time to reassess your priorities.

YES, there is hope for children with autism! But no, that hope should not come at the cost of those children’s family structure!

Lisa

March 5, 2009 at 5:42 pm
(23) Sandy says:

Sorry Pat, ABA does not mean recovery, since autism is about alot more than just behavioral issues to begin with.
As of today, there is no evidence that anything results in a cure or recovery for autism (which includes ABA) and the only ones who make this claim are those promoting what ever it is.

March 5, 2009 at 5:47 pm
(24) Sandy says:

The word ‘obsessed’ I gathered came from the book(s), not directly Lisa’s own opinion however she and any one has a right to an opinion and there’s no law that states any and every one has to agree with it. If lisa was arrogant, she’d not permit other opinions other than her own like other sites do.

I also have the opinion regardless of a child with autism or not, you have to live within your means or in the end you’re not helping your whole family at all.

March 5, 2009 at 6:43 pm
(25) Pat says:

Here’s the logic:

1) Autism is diagnosed by observing a series of behaviors (not physical traits or other characteristics). The established DSM-IV evaluation criteria only addresses behavioral issues. Anything else is conjecture.
2) ABA targets those identified behaviors (as diagnosed by a doctor with additional certification).
3) 47% of kids who obtain ABA therapy no longer exhibit those behaviors.

Very simple – and the evidence is widely available.

I didn’t say it “means recovery”, I gave you some facts, the definition of “recover” and “cure”, and now I’m helping you to understand the logic that you missed. I’m sorry your emotions obstruct your view – but you still have my support as another parent.

March 5, 2009 at 7:12 pm
(26) AutismNewsBeat says:

Pat, where did you read that “47% of kids who obtain ABA therapy no longer exhibit those behaviors?” Can you elaborate? How does this standard of recovery relate to “indistinguishable from peers?”

March 5, 2009 at 7:12 pm
(27) Sandy says:

Pat, my reply was directed towards post 16, so maybe it would help you not be confused to why I made my comment. I didn’t need your help in knowing what ABA is and does, I already know and it does not result in autism recovery.

March 5, 2009 at 8:20 pm
(28) Sandy says:

ANB~ Well, it came right from the Lovaas site of course “children under four-years of age using a 40-hour per week curriculum emphasizing language development, social interaction, and school integration skills. The landmark study Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children (Lovaas, 1987) found that after two-to four-years of intensive intervention, 47% of the experimental (treatment) group (9 of 19 children) versus 2% of the two comparison groups (1 of 40 children) were reported to have achieved “normal functioning.”

March 5, 2009 at 10:56 pm
(29) Sadine says:

Lisa,
Your sentence “….the lists of specific supplements and pharmaceuticals included in both books could substitute for medical advice for some parents”
What medical advice are you talking about? Institution or Ritalin for life is the only medical advise I ever got got from the medical system. I had to make copies of scientific articles on Autism and take them to the Houston Children Hospital (one of the leading hospital in the nation) because they did not have the Journals in their library.

March 5, 2009 at 11:11 pm
(30) Sandy says:

“specific supplements and pharmaceuticals” can have interactions with other medications, and some medications just cant be stopped, they have to be slowly removed. If a person or child has an unknown kidney issue, supplements in high doises can be out right dangerous. If these things are not addressed in any book, they are actually giving medical advice without being a medical professional; not knowing all the ages, weight or medical history of the children who may have parents reading the books.

March 5, 2009 at 11:24 pm
(31) Sadine says:

It is not obsession that characterize the parents of autistic kids. It is a course against time. The earlier (in age) you start the treatment, the fastest you get results. Our son started ABA and other therapies at 2 years old. We wish we could have started earlier when we noticed something wrong at 14 month old instead of waiting for all the non-sense medical analysis, appointments with neurologist, geneticians etc… After just two weeks, he started to talk again and say Hi Mom and Dad. He started ABA therapy with another kid that was four years old. It took almost six months for the other older kid to start talking again. Time is of essence in Autism therapy and if it needs what you call obsession, so be it. The results are worth it.

March 5, 2009 at 11:30 pm
(32) terry says:

I saw a YouTube video yesterday with Jenny McCarthy and she was annoying. If she finds religion we’ll start seeing her on Sunday mornings on the boob tube (yes, pun intended)! Let’s keep the R & D on Autism reserved for those that at least graduated high school, please.

March 6, 2009 at 12:26 am
(33) Sandy says:

I have a child who never learned to speak until he was 4.6 years old and since he still had autism of course, I found I wasn’t sure which was harder, a non verbal child or one that learned to speak however autism often when talked about the first thing mentioned is speaking. My son started everything at age 3, some kids just wont progress at your rate; they progress at their rate as mine did. How about comprehension of spoken or written language? How about reading body language and knowing when to laugh, when to be sad, how to show empathy for another?

In any event, there’s much more to a child with autism than if they’re verbal or not. Many kids with autism can communicate with out being verbal. My child is now quite verbal, he still has autism. Early intervention is the key however when they tell you this, they don’t say “for best recovery”.

The reason I beleive this blog title is what it is, is due to the books own use and their meaning of ‘obsession’. What Lisa quoted was
“In both books, the authors make it clear that they are willing to do anything, spend anything, sacrifice anything in hopes of a cure. Both authors include anecdotes in their books which make it clear that they are horrified by parents who are unwilling to follow in their footsteps.” Yea, I;d call that a book that’s obsessive in an unhealthy way if other do not follow their footsteps.

March 6, 2009 at 12:38 am
(34) Leeann Whiffen says:

In writing this book, I understood that I would open myself up for criticism, and that’s okay. We’re not all going to agree. But, I do think we need to respect one another and how we, as mothers, decide to treat or not to treat our kids with autism. I intentionally did not criticize or even allude in my book that I looked down upon parents who chose not to treat their child as I did – since I’ve never felt those feelings. Each family has their own dynamics, and I find it wrong to place my opinions and values upon them.

I’ve learned to develop a tough skin whether it’s advocating for my kids, or pushing autism legislation in our state to provide insurance coverage for autism. I will never regret the “obsession” I had with doing everything I could and knew how to do to treat my son – even if he hadn’t recovered. I believe my job as his mom is to help and protect him and ensure that he is happy (this definition will obviously vary among parents). A child banging his head on the floor and tantruming 60% of the day is not living a fulfilling, happy life. And I did everything I felt was right to help him. I do not have any regrets, and that’s a good feeling. I respect the choices of others and hope they too will respect mine.

Do I expect every parent to risk what I did to help my son? Absolutely not. Was it risky? You bet. Do I think every parent will have the same outcome? No. I’ve witnessed many parents who have done even more treatments than we did who sadly have not achieved the same results. I also don’t believe it is right for every family to pursue the same road. I wrote my book for the sole purpose of raising awareness, providing support, sharing knowledge, and most importantly, providing hope – because without hope, we remain stagnant. Without action, there’s no progress.

My desire is that families will take my book for what it was meant to be – a hope and an inspiration to work toward whatever the best outcome might be – recovery, or not.

PS: Also, just to set the facts straight, it was said in the review that I singled out the MMR as what tipped my son into autism. That is not true. I don’t know what caused my son’s autism. I detailed exactly what happened – his regression happened to occur at the same time he was ill and given multiple rounds of antibiotics and vaccinations (not just the MMR, that was the one I had discussed with his pediatrician after reading an article about the possible connection). I felt like his vaccinations could have been the cause, but I didn’t know for sure. I still don’t. I’m an advocate for a safer vaccination schedule, but I’m not anti-vaccine.

March 6, 2009 at 1:09 pm
(35) Mary says:

Tying this into your subsequent post, Lisa – Emergency professionals are taught that the first person they must ensure is safe from harm at the scene of an emergency is themselves for the simple reason that if they are injured they are no longer in a position to help anyone else. The same holds true for parents for if they don’t protect their own welbeing and collapse from the strain emotionally or if they drive themselves into financial ruin, they are no longer in a position to help their children with autism or to help their children who do not have autism.

I think we parents forget that doing “whatever you can” for your children means just that, doing what you can reasonably do and then accepting not doing the unreasonable or impossible – without regrets. What is possible and what is impossible is different for everyone and no one else can judge for us where the dividing line is in each situation.

How we “take” the comments of others certainly seems to depend on individual perspective. Many of the previous comments to this post clearly illustrate this notion. I’m glad that the author commented and clarified the thoughts that prompted her to write the book.

To her, I would ask that she keep in mind that it is easier to have no regrets when whatever we’ve done seems to have been successful. However, often comments meant to encourage hopefulness are taken by those who have not had similar success as criticism that imply that there would have been success “if only more had been risked…”

To them, I would say it is true that we are often our own worst critics, since we have trouble accepting that “whatever we can do” must sometimes just be “good enough” even if sometimes it doesn’t completely succeed. Ever the most heroic emergency worker can be confronted by their personal limitations and, to be a good emergency worker, they must accept them so that “all is not lost” in the process of “trying to save everything.” For our families to survive, we parents of children with autism must also be realistic when facing our own personal limitations. No one else can face them for us.

March 6, 2009 at 3:58 pm
(36) Renee says:

I agree, obsessing over it is part of the grieving process. DD was dx almost 2 yrs ago. I read every book I could get my hand on just to learn as much as possible. I often think of how she will take care of herself and be independent after I die. That scares the hell out of me, for some reason I picture her in a nursing home at age 20 and also being sexcually abused by anyone who will take advantage of her inability to communicate. it terrifies the shit out of me to the point where i am going to do anything to help her. But not to cure, but to help her be as independent as possible and to live in the community. We only tried speech therapy and OT once a wk as insurance covered for 1 yr and then I said this is not working so I looked into aba and started it a yr ago, my dd has learned so much since! She learns in a very different way. Yes it is expensive as hell and insurance should cover it but they do not at this time. I know my dd will always have autism but now I finally found a way she can learn (and everyone is different but research has shown that aba helps children with autism learn many things), things I never thought my dd would be able to do she is doing now. I am not sure how I feel about this article. I think that any good parent would “obsess” over a serious disability their child has and want to do anything to help them no matter what the disability or disease.

March 10, 2009 at 4:57 am
(37) John says:

Our son was referred by family doctor to school services. He was a happy and over excited kid but developing slowly. School did numerous evaluations, waited until after the holidays and dropped the news in our living room. My god I was a dad that was going to fix my son. I read for a month straight, drove our doctor crazy. Now at age eight, he is way behind in a lot of areas but improving due to 2 1/2 years of 40 hr Lovaas ABA. They laid the foundation before insurance dropped out. Now I have to say, i’ve learned so much about life and myself. My son has taught me patience, he’s taught me to stop and smell the roses, we go to Sam’s club and just look at everything there. He loves that and it’s free! then I use that opportunity to try and get him to interact with people there. Things are good but I do worry, worry, worry about his future, don’t we all?. So my advice is when diagnosed, dads chill out and relax. Don’t set out to “fix” your kid but do enroll in all the proven effective services you can and learn what they do. Like it or not, you will become a special ed teacher too!!

March 12, 2009 at 9:51 am
(38) Denise says:

I think Lisa has a point; my son missed out on many treatments/therapies simply because he wasn’t diagnosed until he was almost 6. He is high functioning and because my husband and self are basically shy and introverted, I chalked up much of what I saw to him being like us and our pediatrician was clueless. I started homeschooling him last summer at 11. His academics have come along tremendously, but because both of us work full time, I am not able to do all the socialization types of activities I would like.

Anyway, I would like to point out that many parents with NT children obsess the same way. I know plenty of people who risk their marriages and finances to do what they think is best for their kids. Dance lessons, music lessons, sports, tutoring, exclusive day care centers and private schools, and this list goes on and on. Are their children comparatively better than those who don’t make those efforts? Some are and some aren’t- it seems similar to me. I think it just depends on each individual parent and child.

I don’t read many of these books, but I remember when Jenny McCarthy came out with her book, well meaning coworkers tried to convince me that she had found a cure. I don’t believe there is a “cure” and I felt like her publicity push left parents who didn’t try her methods looking bad, like they didn’t care.

March 12, 2009 at 3:34 pm
(39) Patricia says:

I noticed several mentions of the 1987 Lovaas study. This study irks me–the sample size is relatively small, and children below a certain level of intellectual functioning were excluded from the study. I’ve tried more than once to find studies done after 1987 that try this same intensive approach to intervention, but with the kids with both autism and intellectual disabilities, and I haven’t found much. Given that many children with autism also have mental retardation, and the way that ABA-based interventions are touted by many as the research-based end-all, I find this rather troubling. I work with kids and adults with autism. I draw heavily on my knowledge of ABA in my work. Knowlege of the principles and techniques of ABA makes me a far more effective therapist and job coach than I otherwise would be, and I am constantly learning. In my experience, my clients with both autism and intellectual disabilities did not respond well to intervention that emphasized discrete trials in a therapy room-type setting. Intervention in the natural environment, drawing on principles of verbal behavior, knowledge of prelinguistic communication (basic joint attention skills like pointing–see the speech/language therapy research), and techniques of positive behavior support and pivotal response training, seemed to work far better.

What’s my point… “Evidence” is a tricky thing! And, I think the outcome of the 1987 Lovaas study, and the follow-up to that study, have been VERY over-generalized in discussions about effective interventions for ASDs. I think our evidence base is incomplete. And, I think the research and practice communities owe it to individuals with both autism and intellectual disabilities to generate research that speaks specifically and accurately about their learning needs and the most appropriate contemporary ABA-based interventions that meet those needs.

March 14, 2009 at 11:48 pm
(40) Kathy says:

I find it sad that after so many years of the increasing numbers of children diagnosed with autism, that parents are still left to themselves to determine treatment plans and options. This is because the medical community knows no more now than they did 15 years ago when this epidemic began. There is not one medication on the market for autism. All medications used for autism treatment are medications designed for another disorder and used offlabel for autism. Parents are left to “obsess” about their children because the medical professionals have so little to offer. If there was really intensive research happening, parents may have better treatment plans to choose from. After 15 years, where are the advancements??? More and more children are diagnosed each year, and parents are left to pick the cure of the month from list serves and support groups instead of medical professionals. I see no progress being made – more reason for parents to take it all on themselves.

August 26, 2009 at 10:37 pm
(41) Vince Whirlwind says:

Three comments:
- Everybody wants to think they are trying their best. Under difficult circumstances even valid criticism can cause extreme defensiveness.
- Whiffen says her child’s autism did “occur at the same time he was ill and given multiple rounds of antibiotics and vaccinations”. This is absolutely terrible confusion! Vaccinations do NOT address existing illness and NO child is given vaccinations during an illness. Your doctor will always check your child’s health and will not vaccinate during an illness. (On the other hand, there is a strong association between children who take a lot of antibiotics and autism.)
- ABA/Lovaas – you can’t possibly claim these are “proven” based on one very small study involving a non-representative and carefully hand-picked subject group. It’s not to say it’s a bad idea, but you shouldn’t be mortgaging your house on account of a totally unproven treatment which appears to be aimed at exploiting people who are in difficult circumstances.

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