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What About the Child Without Autism?

By August 14, 2010

In many families with an autistic child, parents are in "emergency" mode.  Responding to the diagnosis as they might to a medical emergency, they drop everything to provide what's needed.  At home, dishes, bills and family dinners may go by the wayside.  In the community, friendships may slip and obligations may be forgotten.

When a parent is coping with autism, there just doesn't seem to be time for siblings' soccer games, social events or favorite outings.

And when a family is living with an autism diagnosis, the needs of children outside the family seem to disappear.  So what if other kids lose out on the arts or athletics in school to pay for special needs programs?  Tough luck on the teens whose college fund suddenly disappeared to support an intensive therapeutic program.

After all, some parents reason, those kids are typically developing and can take care of themselves.  A child with autism can't.

Autism, however, is not a medical emergency.  It's a way of life.  While a child with autism may improve tremendously with appropriate interventions, treatments and supports, those interventions, treatments and supports will be needed (at least) for many years.  Unlike a crisis, which is over quickly, autism will go on and on.

What's more, neither children with autism nor anyone else is likely to respond better when their family is in a state of upheaval.  In fact, kids with autism are MORE likely to need stability, predictability and harmony than most people.  And that goes double for the kids withOUT autism whose lives are suddenly set aside for the needs of a "special" sibling.  Not to mention the parents of the child with autism, who may be responding to a child's needs by undermining their own communities, careers, marriages or financial well-being.

Another important point to consider: the fact that a treatment or intervention is expensive or difficult to obtain does not guarantee that it is likely to be particularly effective.  Sure, you can spend thousands flying to the clinic of Dr. X for an expensive patented treatment, but you might do just as well driving around the corner to Dr. Y, whose services just happen to be covered under your insurance.  Today there are even do-it-yourself therapies such as floortime and some forms of ABA which may quite effective for your child.

If, as some have said, autism is a marathon - and not a sprint - then crisis mode is not the right response to an autism diagnosis.  Nor is an attitude of "do anything, sacrifice anything."

While a parent has the ability to decide the he or she really wants to sacrifice everything for the child with autism, the autistic child's siblings and schoolmates have no choice in the matter.  And while other children may not be autistic, they, too, have needs.  Many have challenges.  And none have the ability to just go out and find themselves the enrichment opportunities, tutoring or funding they need to explore their talents, build their resumes, pay for college, and find the job of their dreams.

Comments
August 14, 2010 at 10:28 am
(1) barbaraj says:

I don’t have that problem because none of my children could make the claim that there was ever enough time or money to go around . I have had women say to me a similar sentiment, “I stopped at two so I’d be certain money is there for them to have all of the “goodies”, nice clothes, great vacations, tutors, education”. Everyone wants to give to their children, yet an illness in us, or our kids, or even a new baby cuts that pie into smaller slices.

August 14, 2010 at 11:32 am
(2) Bill says:

I am endowed with Asperger’s.

I have “invested” over a hundred thousand dollars in my adult low functioning Aspie son. (I don’t know what else to call someone with no verbal delay, high IQ, but clearly so autistic he cannot function in normal society for lack of what some would call “common sense”) Much of that investment is in a home with apartments so that when I pass, he has a place to live with automatic income.

My son is capable of making reasoned choices, but his autistic inability to respect others and respect society’s norms doom him to his precarious relationship with society. You can discuss cause and effect with him on a highly intelligent level, and have him agree that the long term consequences of his choices are bad, yet he seems mentally incapable of living beyond the moment.

But I feel he does make choices, and must bear responsibility.

Since he is responsible for his actions, it is not fair to his siblings for me to spend part of their inheritance on a brother who is prodigal, idle and foolish, yet the emergency nature of each new challenge he brings upon himself or the family demands immediate and often expensive solutions.

This has been discussed with my son, and within the family. My son is intelligent, and easily grasps the concept that it is not fair to give him over $100,000 and stiff his siblings. When my wife and I pass, our estate is to be settled equally, adjusted for these wildly disproportionate expenditures. The daughter who put herself through school through scholarships and working will get more money than the sons who had to borrow from us, and the prodigal son will not get much, for he knows he is already living in his inheritance.

I want to re-emphasize personal choice and fairness. I have a son who I am pretty sure has a type of Asperger’s very similar to my own; intelligent, and making the choice early on in his life to pretend to be normal. He does it so well, it creates uncertainty regarding whether he even has Asperger’s. That son seldom gets mentioned in this blog because I have every expectation of him being successful like I am, and he has never caused a problem. Like me, he is endowed with Asperger’s; his mathematical abilities will earn him a living. Why should one Aspie son get less than the other Aspie son, when each has intelligence and a free will and ability to make choices? The unfairness of it all hits me personally too; I will have to delay my retirement, forgo dream vacation trips to Europe, etc. in order to finance my prodigal son. He concedes it is not fair to me. Yet improvements in his ability to not live impulsively come excruciatingly slowly.

I may escrow part of his inheritance and put one of his siblings in charge of it so he cannot foolishly dissipate it, and so that his siblings don’t have to ever find themselves in the position of anteing up money for him.

Summing up my position; yes autism is unfair to siblings, and I feel a parent must have a long term goal to support and train for independence, for the inevitability of consequences, and try if they can to make it all balance out in the end.

August 14, 2010 at 12:38 pm
(3) autism says:

bill – while I understand your desire to set your son with autism up with an income, I wonder whether asking him to manage an apartment building makes the most sense. From what you’ve said in prior posts, he’s really not able to handle such a complex job, which really does require considerable people management, tact, mechanical and technical skills and financial skills.

Would it make more sense to sell the apartment building, buy him a small condo, and set up a special needs trust or annuity? If he really can’t make a living, he may qualify for SSI disability income – and with a special needs trust managed by a trusted sibling, he may be well set up for the future.

Lisa

August 14, 2010 at 4:41 pm
(4) Suzanne says:

Let me just say…that I disagree with the spirit of what you’ve written here. Let me explain, point-by-point:

“In many families with an autistic child, parents are in “emergency” mode. Responding to the diagnosis as they might to a medical emergency, they drop everything to provide what’s needed. At home, dishes, bills and family dinners may go by the wayside. In the community, friendships may slip and obligations may be forgotten.”

While this is true in many situations, I cannot see this as a “bad” thing. I went to a birthday party for a 4 year-old girl once who had 35 little friends at her party. When it came time to open gifts, she had 35 presents to open and had to sit through the duration while the other children got impatient and went off to play. I was so struck by the excessiveness of that party that I honestly don’t have a great appreciation for any lavish displays on one child. So much of what we do for children today is excessive.

“When a parent is coping with autism, there just doesn’t seem to be time for siblings’ soccer games, social events or favorite outings.”

This may be true in some cases, but certainly not in all…or maybe not forever. I have a great exposure to a wide variety of families who have children on the spectrum of varying degrees of severity. They all have some semblance of support: husband and wife take turns, grandparents, good friends, church members, and then there are government services and schools.

“And when a family is living with an autism diagnosis, the needs of children outside the family seem to disappear. So what if other kids lose out on the arts or athletics in school to pay for special needs programs? Tough luck on the teens whose college fund suddenly disappeared to support an intensive therapeutic program.”

Again – I have never seen this. Never. My other children have lost NOTHING as a result of our son’s autism. If anything I believe they’ve gained an ABUNDANCE. All of their extra-curricular activities continued uninterrupted. However, not only are they a help to our son (and a friend I might add) but they have reached out to every autistic child they know from severe autism, to mild, to aspergers… We never had a college fund for them in the first place, but we definitely encouraged academics. MOST families do not have a college fund for their children.

“After all, some parents reason, those kids are typically developing and can take care of themselves. A child with autism can’t.”

I agree with you here, when it comes to Bill’s concerns over inheritance. My parents talk about it, but their parent’s estates were eaten up by elderly care – nursing homes, etc. I hope that I never see one dime of my parents inheritance and I have been and will teach my children to support themselves if they are able. It is unwise for anyone to plan to be dependent upon their parents for their future. However, while no doubt the siblings are absolutely affected having an autistic sibling…this does not mean that parents seemingly abandon the other children. Independence, in my opinion, is a strength if it can be achieved and maintained.

“Autism, however, is not a medical emergency. It’s a way of life. While a child with autism may improve tremendously with appropriate interventions, treatments and supports, those interventions, treatments and supports will be needed (at least) for many years. Unlike a crisis, which is over quickly, autism will go on and on.”

Here, I agree with you 100%

“What’s more, neither children with autism nor anyone else is likely to respond better when their family is in a state of upheaval. In fact, kids with autism are MORE likely to need stability, predictability and harmony than most people. And that goes double for the kids withOUT autism whose lives are suddenly set aside for the needs of a “special” sibling. Not to mention the parents of the child with autism, who may be responding to a child’s needs by undermining their own communities, careers, marriages or financial well-being.”

Whether you realize it or not, here you are accusing us of setting aside the needs of our children, marriage, selves…not true for me or anyone I personally know affected by autism.

“Another important point to consider: the fact that a treatment or intervention is expensive or difficult to obtain does not guarantee that it is likely to be particularly effective. Sure, you can spend thousands flying to the clinic of Dr. X for an expensive patented treatment, but you might do just as well driving around the corner to Dr. Y, whose services just happen to be covered under your insurance. Today there are even do-it-yourself therapies such as floortime and some forms of ABA which may quite effective for your child.”

Agreed.

“If, as some have said, autism is a marathon – and not a sprint – then crisis mode is not the right response to an autism diagnosis. Nor is an attitude of “do anything, sacrifice anything.””

There are specialists who would disagree with this…and I think this could be interpreted many ways. The sacrifice might not be as extreme as you describe here…

“While a parent has the ability to decide the he or she really wants to sacrifice everything for the child with autism, the autistic child’s siblings and schoolmates have no choice in the matter. And while other children may not be autistic, they, too, have needs. Many have challenges. And none have the ability to just go out and find themselves the enrichment opportunities, tutoring or funding they need to explore their talents, build their resumes, pay for college, and find the job of their dreams.”

This is given to individual situations/people. It just simply is not true for us…we teach our children. We have not needed to spend a lot of money on enrichment. Tutoring was at school, from my husband or I, or one-on-one with a teacher at a virtual school. There is an abundance of opportunities in our school to explore talents. My kids took a highschool business class which taught them how to build their resumes. Their first full year of college is paid for by scholarships (there are many available for those who search for them and there is many times a resource officer working at the school to help). They found jobs with a broad-based approach and persistence…although it did take time. The job of their dreams may come…but most ADULTS are still looking for that…

August 14, 2010 at 5:26 pm
(5) autism says:

Suzanne – clearly your situation doesn’t fit into the description in my blog. Neither does mine.

But the fact is that many families do “sacrifice everything,” often at the recommendation of people in the autism community who suggestion that only in that way do they show their true dedication to their child with autism. I’ve heard about a man who sold his kidney to pay for autism education; while that’s extreme, there are certainly plenty of families that run the risk of financial and/or emotional disaster in the name of autism therapies.

You describe a child’s party that’s really pretty over the top – and you’re right, some folks ARE over the top relative to giving their kids everything. But that is really neither here nor there relative to my blog post.

Lisa

August 14, 2010 at 5:56 pm
(6) Suzanne says:

I appreciate that Lisa. I didn’t get the impression from your blog that you were speaking about exceptions. Yes, the party I described was an extreme too…the point being that some things can be sacrificed for children which might actually be healthy. It is impossible to describe autism or the way it affects anyone in a broad based way. I’ve heard stories about the extremes, but I’ve never seen it first hand. I believe that maybe some of the extremes are being pushed in an attempt to further autism agendas (possibly…I don’t know this for a fact). It really struck a chord with me and I think it’s important to point out the the balance that exists for many in same circumstances you describe in the points you were making.

August 14, 2010 at 7:08 pm
(7) Faith says:

Suzanne what a wonderful email response. I applaud you. I also took issue with “the spirit of this blog article” and even more so because the response you got was “you’re family seems to be an exception and so does Lisa’s!!!” Huh, I sure felt that your words here were written to many from experience and to be informative. They are sure worded that way!!! I did not feel that the article at all made mention to “exceptions” or that WOW! your own family was one. Even the response to Suzanne “I heard of a guy selling his kidney for $$$ for autism” seems kinda SINGULAR incident and not strong enough for this whole article’s spirit in which you wrote it. I could go thru it point by point and agree with Suzanne almost completely. But, no I will just tell the internet society that our family is also an exception. We include not just one child on the spectrum but two. We do have challenges to “friend relationships” and even to our own marriage. And I do feel that we shouldn’t, and not many now do, teach their childrent to expect or plan on monies from their parents in later years and not to plan for their own future without the nest egg. My children’s education has only thrived with this autistic challenge as it was made the goal of our family. Maybe they don’t get to go to the annual town christmas party every year or all the community happenings every single day. But, they are reading many grade levels above their actual grade and academics are amazing the entire school. I have no question about my family and our choices. And yes, we do live as with “an emergency” in a state of crisis!! But, we continue to dream each day and hope for more and more goals met each day. You see we have hope and love. And, one other thing too too many times I let the down the street “cheap” untrained medical person tell me it isn’t reflux, it isn’t seizures, it isn’t autism, it isn’t developmental delay etc. I didn’t press on and “buck” the system and try to get the kids what they needed. But, as soon as I saw that a lot of these tiny and yes, some rather large things could make some difference in our children joining the community then we pressed on. No, we haven’t done crazy things and put our finances in complete jepordy. But, even gas to therapy has easily done that!!!!!!!! Another interesting fact about this article is that you deny it is your family too, but you list your son as home schooled and daughter as in public school. It sounds to me like a “sound-off” about your own situation exactly and what your family has missed out on. I have almost killed myself with the effort that I have put out to have our kids in public school. And at each IEP meeting with the school staff it is like a war zone. But, the kids are doing great and no one can believe it. Everything isn’t all roses but, it is the place for them to be and get a fair education as any “normal” child would!!!

August 14, 2010 at 8:53 pm
(8) autism says:

I’ve essentially dedicated this site, my book (www.lisarudy.com/getoutexplore.htm), and my life to the “happy medium” – the approach that says “I love my kid, I acknowledge that he has challenges, I’ll do everything within my power to help my child, but I won’t undermine my marriage or drop all other interests to ‘save’ him from autism.”

But there are many, many blogs and publications, from Jenny McCarthy’s books to Age of Autism to many of the memoirs, advice books and websites out there, you’ll see that I’m not inventing straw tigers.

There are plenty of folks who believe that the “battle against autism” should take all we have and more… that it is our duty to fight, sacrifice and, if necessary, lose friends, relationships and even homes and marriages – because that’s what “warrior moms” (and dads) do.

It’s actually quite surprising to me to get these comments; I had anticipated a barrage of comments telling me to get with the program and accept that autism takes everything from us.

Kinda nice to see I was wrong!

Lisa

August 14, 2010 at 9:58 pm
(9) Suzanne says:

LOL…it is true that there is a lot of stuff out there which purports an “ideal” for what it takes to “heal” autism. From what I have seen, most parents I have met choose a moderated version of the methods recommended. In our case, we tried the GFCF diet and it did help us, but I don’t honestly believe that it is the answer for every child. Most used different approaches of therapy (ABA, Floortime, etc). Some homeschool, some private school (in Florida through the McKay Scholarship), and some stay the course with public school. I’ve met Mom’s who say they wish they could “do this” or “try that” but say they don’t have the funds. Even my pedicatrician sells vitamins which average at least $50 a month (which I can’t afford) and so I took the affordable alternative and I think it is helping fabulously (yes I know, controversial). I think, if I’m not wrong, that most people are realistic about their circumstances and, like we all do for any of our children, they set out to do the best they can with the resources given. But, I do think that the hype surrounding the suggestions that “you must do this or fail your autistic child” does leave too many parents (Moms?) feeling like somehow they’re failing to do enough. And that is wrong. I don’t know…I suppose since I came to this after an abundance of resources were already available through the internet, that I’ve always taken a look at the options and gone with whatever has helped. Like others, I don’t have the funds to do anything extreme…my guess is that this is the truth for most… Could I be wrong? I hope not…

August 15, 2010 at 6:44 pm
(10) barbaraj says:

I do agree with Suzanne the siblings of autistic children have gained something valuable. I often see on here where some are hoping for friends, a movie date, a card game, where my child has it all built in ,with his brothers. I also feel the pain, and wish I lived next door to all of you, my kids would be your kids’ friend, because they “know” there is a person inside of autism and would go on playdates willingly with any one of your kids, especially if you have food:) When my son was non verbal , I will never forget the dialogue my now 14yr old son would set up, ask a question and answer it. Do you want to roll a ball, of course you do. Do you want me to paint with you, of course you do. Now he talks and he gets corrected sometimes, because the other boys havel a “line” drawn for what he can say, some expectation of social grace, and it’s okay. There are times it’s not, and the others temporarily give up, but they come back. They are very forgiving and are very understanding, even the two 1/2 year old.

August 16, 2010 at 5:47 pm
(11) Malia says:

Bill, I believe that fairness is often not a factor when people decide how they want to divy up their estate.

For example, the way my in-laws will currently reads, my son will benefit much less from their estate than my in-law’s step-grandchildren despite the fact that my husband’s sibling divorced the parent many years ago and my son is their only grandchild by blood.

We’ve never borrowed from my in-laws or anything like that, but they seem to feel that their step-grandchildren (who are “normal”) will appreciate their bequests more than my son can. I think it’s unfair, but it IS their money to give to whomever they please… no excuses actually needed.

August 17, 2010 at 8:55 pm
(12) Twyla says:

I am all in favor of balance. Certainly our NT children need us too. And we need to take care of ourselves and our relationships and finances as well. But this article is a bit odd. Perhaps part of what strikes me wrong is the statement that, “Autism, however, is not a medical emergency. It’s a way of life… Unlike a crisis, which is over quickly, autism will go on and on.” This blanket statement ignores the fact that for some children autism is indeed a medical emergency, with seizures, inflammatory bowel disease, and other medical issues that demand treatment. With proper treatment, some people get a lot better and the quality of life improves not only for that person with autism but also for the whole family.

And, some people do recover from autism. Yes, parents must accept that their child’s future and response to treatment is uncertain. But I agree with Suzanne’s statement that “It is impossible to describe autism or the way it affects anyone in a broad based way.”

I was kind of wondering whether this article was aimed mainly at those pursuing biomedical treatments, and this seems to be confirmed by Lisa’s comment that, “But there are many, many blogs and publications, from Jenny McCarthy’s books to Age of Autism to many of the memoirs, advice books and websites out there, you’ll see that I’m not inventing straw tigers…” I have read Jenny McCarthy’s books, and I never felt she was advising us to “lose friends, relationships and even homes and marriages” in order to become mommy/daddy warriors. She gives a lot of common sense advice about treatments which can make life easier for everyone. I have gone to TACA meetings and did not feel that anything was being forced on me — I was just offered information that could be very helpful. Jenny and TACA and AoA certainly express the importance of taking care of yourself, your marriage, other children — and keeping your sense of humor.

So, while I do agree that it is important to keep some balance in your life, and it would be unfortunate to mortgage your home to pay for treatments which turn out not to be beneficial, and I appreciate the message that we need to let go of the guilt over not doing everything under the sun, I also agree with Suzanne’s concerns about this article.

When you meet one child with autism you’ve met one child with autism. And when you meet one biomedical mom you’ve met one biomedical mom. All are different; I can’t guarantee that none are pushy proselityzers, but that has not been my experience. Sometimes over-the-top obsessive zeal is temporary and useful. Again, I do believe in balance. But, in the face of this huge increase in autism which is not being addressed by our health authorities and institutions, some of the best and brightest feel compelled to react with a sense of emergency, and that is a good thing.

August 17, 2010 at 9:51 pm
(13) autism says:

Twyla – the tricky thing about this issue is that seizures or other medical emergencies ARE medical emergencies, and of course seizures CAN be linked to autism. Yet autism in itself – the social/communications challenges/disabilities that are central to the disorder – are not emergencies and can’t be treated as such.

It’s true that biomed moms and dads are sometimes very very passionate and single-minded in their approach to autism, but to be fair so, indeed, are ABA parents and floortime parents. And the reality is that it’s ABA and not biomed, for the most part, that’s likely to bankrupt a family (unless services are provided through insurance or the school district).

August 18, 2010 at 10:04 am
(14) barbaraj says:

I don’t think mortgaging the house is out of the question, and doing so for something that you believe will help isn’t that abnormal. I’ve had friends mortgage their homes to send “nt’s” to boarding school, just to get the kids out of the neighborhood loop. I’ve one that did so to give her daughter a chance at juliard, had another that did the same for a hopeful ice skating olympian. This is what we do as parents of any child, if we “believe” it will provide a better future for our kids and mortgaging ..lines of credit..are our only resource .

August 18, 2010 at 11:08 am
(15) Twyla says:

Barbj, I’m not saying that nobody should mortgage their house, but that it would be unfortunate to mortgage your house for the sake of treatments that don’t turn out to be helpful. Decisions are difficult with so much uncertainty about treatments and outcomes. Some degree of caution is called for, depending on one’s resources.

Lisa, sometimes autistic behaviors are at the level of being an emergency, and sometimes addressing underlying medical conditions helps with the behaviors. There is an increasing amount of evidence that certain medical issues affecting digestion, immunity, metabolism, and more are an integral part of autism, not separate issues. And yes, ABA can really stress a family’s time and financial resources.

August 18, 2010 at 12:11 pm
(16) autism says:

ok, YES, if you can afford to mortgage your home to pay for useful and appropriate treatments that help your child then of course it’s fine to do so.

and YES, if your child is doing something that requires emergency intervention then it IS an emergency and you should respond!

of course my point is not that people should avoid spending money they have or avoid treating medical problems. rather, it is that a child with autism is just one member of a family- and that each member of that family has a right to time, love and support.

when autism as a long-term developmental challenge is treated as an emergency, and becomes the focus of too much time, money and anxiety over too many years, other family members suffer.

what’s more, the fact of spending all that time, money and anxiety may actually undermine the stable, supportive, loving home that’s so critical to the welfare of the child with autism and everyone else in the family.

Lisa

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