1. Health
Send to a Friend via Email

Discuss in my forum

Why Is Autism Stressful for Parents?

By June 22, 2010

A while back, I wrote about a new study that finds that raising kids with autism is more stressful for moms than raising kids with other developmental issues (dads were not included in the study). The researchers suggest that the "special" issue involved with autism relates to "autistic behaviors," which can really send parents over the edge.

A Q&A with the researchers on the New York Times site adds a little more grist to the mill. After reading the article, though, I had to think that the researchers asked the wrong questions.

What's stressful about raising a child with autism in 2009? Sure, raising a child with a disability is hard and thankless work -- and that, in itself, is stressful. But here's my list of what REALLY causes stress for parents with kids on the autism spectrum:

  • MONEY!! Even as some insurers are stepping up to the plate with some support for some treatments, others are running as fast as they can in the other direction. Families are spending far more than they can afford on autism treatment. That's stress for you.
  • GUILT AND ANXIETY. There's plenty of info on the web that suggests that parents are in some way responsible for their child's autism, could have prevented, could cure it, or should provide more and more and more treatments for their child. No one can do it all -- but that doesn't mean you don't feel you should. Talk about stress!
  • RED TAPE. If the researchers have never dealt with the special education system or state healthcare systems, they have no clue what stress looks like.
  • OTHER PARENTS. Every support group for parents of kids with autism includes at least a few vigilantes who are determined to indoctrinate all the other parents in their point of view on autism. Just coping with their onslaughts is tough enough -- even tougher is resisting their sales pitches and guilt trips.
  • THE MEDIA. Every day there's a new story about causes and cures for autism. Which bandwagon should you jump on? Is there a conspiracy to injure your child? Should you sue the vaccine courts? Will this or that new finding change everything? There's nothing like uncertainty to induce stress.
  • LONELINESS. Parents of kids with autism are forced to the sidelines in so many ways. No, their kids aren't on the soccer teams, performing in the dance recitals or inviting friends for play dates. No, they can't hang out with other moms while the kids "play." No, they can't attend big, loud family events and expect a fun, low-key experience. In short, it's lonely and alienating to be the mom who is never able to just say "yes" to fun and friendship.

What do you think? Am I on track with these thoughts? Or is it really the kids with autism who are causing all that parental stress? Let me know your thoughts!

Comments
July 16, 2009 at 12:13 pm
(1) Sarah O says:

Wow, you hit the nail on the head with this. I experience a lot of these problems almost on a daily base. My son is now 5 and we have known of his PDDNOS/autism since he was 2. Some days are better than others, but it is hard. Most parents of typically developing children don’t understand and will probably never understand how hard it can be. Just going to the grocery store or mall can be very challenging and I won’t take my son unless my husband can come too. Thanks for putting this out there and I hope others can be more understanding one day.

July 16, 2009 at 12:50 pm
(2) Bill says:

When I was raising my sons with Asperger’s, my intuition was to handle discipline the same way my (probably Aspie) Father did; spank them every time they did something wrong, which worked extremely well for him, and is the reason why I integrate so well with society as an adult. Unfortunately, I discovered that modern neurotypicals cannot comprehend that spanking is the only thing which works with children with no intrinsic empathy, and left me utterly stressed, knowing if I didn’t discipline in the only effective way, my children would fail to learn to integrate with society, but if I did spank, someone might turn me in for child abuse. My Aspies soon learned that society frowned on discipline. They would shriek with laughter and hold their hand to the side of their head and say into the “telephone”, “Hello. child and family services!” Once they figured out there was no way I could enforce discipline, the situation rapidly deteriorated. Ground them? Ha! Like they can’t figure out how to get past locks or out the windows. Send them to bed without supper? Ha! They’ll help themselves to ice cream if they want, they know there is nothing you can do. It only got worse as they got older. Drugs. No interest in staying employed, no interest in looking employable. My stress, then and now, was caused by politically correct neurotypicals who autistically couldn’t comprehend that you can’t “guilt” an Aspie into behaving like you can a neurotypical child, only spanking works. And now neurotypicals wonder why there are all these autistic brats around when there didn’t use to be brats all over in public. I and my Aspie brothers were not brats in public. My children were/are, only difference? Discipline.
Had I been able to spank, I would not have had stress then, my children would have grown up to understand consequences to actions, and I wouldn’t have the financial drain I now have trying to support non-functioning members of society.

July 16, 2009 at 1:05 pm
(3) John says:

Add FEAR. Fear that no matter what you do, your child may never be able to function on his own, but be dependent on others (family or third parties) for the rest of his life.

July 16, 2009 at 1:41 pm
(4) henderson says:

Great article. But, you missed one… other people’s denial of your truth, your experience, your child.

After coming out of denial when my child was 26m old, I was driven to get him diagnosed and to start therapies. 1) My husband was not there – at all and undermined my in front of doctors – refused to listen to “women without MDs who were legally now allowed to agree with me – as I was no longer saying “I’m worried”, I was saying “It is a fact, how many more red flags do we need.” What is what I call a “woman without an MD?” – a professional who has dedicated her life to children with special needs – a speech therapist, a ABA therapist, a preschool resource teacher – even a psychologist – as she doesn’t have an MD – and it is not a “real science, and they don’t even belong in the faculty of science” – spoke via my husband who is a professor in what he considers to be “real science”. 2) When my second son was born (my older was 34m… I had a c-section, my mother-in-law was the one who stayed in the room with me (for about an hour, just the two of us) about 10 hours after child two was born. Ready? She said, “my grandchild (the 34m old) does not have autism, I know autism and this is not autism. You need to stop all this speech, ABA, diets, etc.” AHHHHHHHH. It still makes me cry when I think of this. 3) Let alone all the doctors who don’t believe you re: how different your son can be from day to day (sometimes even hour to hour)… If they don’t see it, they don’t believe it. 4) He’s very high functioning, but anyone in our world can pick it out in a heartbeat… So, increasing my loneliness with NT mothers, even my sisters… “what’s the big deal, he’s so high functioning.” I read a great post over on Age of Autism the other day… “Autism, Asperger’s: Who is truly disabled?”
http://www.ageofautism.com/2009/07/who-is-truly-disabled.html

This was Mary’s reply (July 13, 12:02pm)
“When my son was in preschool, one of his classmates had aspergers. I was secretly jealous of his mother because she appeared to have less issues to deal with. Well, one day I watched her son play soccer and he kept kicking the ball in the wrong direction. He had no idea where he was or where to hit the ball (just like my son.) He also started terrorizing my son by blowing in his ear and hitting him. I soon realized that he had just as many issues as my son but he had much better language. Aspie’s have autism with language.” I couldn’t have said it better.

So… add one more to your list… the deniers to what is going on with your child. It is unbelievably hurtful.

July 16, 2009 at 1:53 pm
(5) passionlessDrone says:

@ Bill –

Your children aren’t kids anymore. Why not beat them up now, you can’t have child services called on you anymore; after all, it’s the only thing that works.

- pD

July 16, 2009 at 1:57 pm
(6) Schafer says:

Who exactly are these “OTHER PARENTS” you characterize as outlaws who cause such harm to families with autism? This is serious stuff. Can you name names and give examples? Have you discovered a new breed of refrigerator moms to blame for the hardship of autism, or is this just fallacious straw man stereotype you’ve constructed to demonize those who don’t agree with nuero diverse sympathies? Who exactly are these nasty outlaws, Lisa Jo?

July 16, 2009 at 2:34 pm
(7) autism says:

wow, Lenny – you’re making an awful lot of assumptions about my meaning here.

If you’ve been (and I’m sure you’ve been) to parent support groups, you KNOW how many are absolutely gung ho on their treatment, therapist, school, etc. — and many are absolutely determined to ensure that everyone follows in their footsteps.

These folks are by no means all biomed advocates. Some are evangelists for particular speech therapists, play therapists, schools, supplemental cocktails, social skills coaches… and each is more absolute than the last.

If I followed the “advice” of all the evangelists in all the groups I’ve attended, my child would be in 50 different classes with all the priciest therapists in the state!

Lisa

July 16, 2009 at 3:55 pm
(8) Lyn says:

I agree FEAR – everyday wondering where he is going to go to be taken care of when I can’t anymore. Fear is huge.

July 16, 2009 at 7:30 pm
(9) Allison says:

Lisa I have to agree with Lenny. Again we’re back to blaming other parents, no matter how it was meant, that’s what was implied.
Your “Guilt and Anxiety” was also directed at other parents who have expressed their experience in improvements or treatments that helped their child(how dare they). Instead of directing it at the “refrigerator mother theories” or “you had your baby too old theories”(I was 29), or “you let them watch too much tv”, etc. all stemming from societal ignorance.

My stress?
1)Begging someone, anyone in the field of medicine to pay attention to the fact that my son is sick, the regression and physical illnesses accompanied by it were/are real and not “in my head”. He needed the treatment and testing he’s finally getting now, over 7 years ago, but medical “ego” made it impossible to take parental report/observation, etc seriously enough to treat his physical underlying illnesses.
2)Having a child brilliant enough to get around every possible invented childproofing in order to escape the house, but without the understanding of danger. The non stop heart attacks that came from this are beyond any other stress.(don’t know how you could have missed this one, unless you just wrote this entirely to blame those “other parents” for all of the stress)
-Years of cleaning up actual sh%$, everywhere, for way too many years. Having everyone blame me for not being effective enough in teaching him to go on the toilet. The only people to understand my difficulties in this area were other parents of kids with ASD. Do I judge or Guilt those who were like me when I was unsuccessful? No, but I let them know the how, why I was able to teach him successfully, so that IF they want to they could try the method that helped me.

Having other parents of ASD kids tell everyone what was helpful to them, and what worked for their child, is a gift, not a guilt trip towards anxiety. It’s a gift of hope and accompanied by a tool that may possibly help someone else. Even if only one other child is helped, that gift has become priceless.

July 16, 2009 at 7:39 pm
(10) autism says:

Alison, you say “Having other parents of ASD kids tell everyone what was helpful to them, and what worked for their child, is a gift, not a guilt trip towards anxiety.”

I’ve certainly met wonderful, helpful parents of children with autism.

But I’ve also found that many are absolutely insistent that they have found “the cure,” and passionately dedicated to the idea that everyone else should follow in their footsteps. As a result, I’ve been buttonholed, harangued and lectured — and I find that any argument leads only to more of the same.

Early on, I said “oh, that sounds wonderful” to some of the other parents I met, and spent thousands on therapists whose reputations were far more impressive than their actual merits deserved. Those therapists were talked up by parents all over town — mainly because all the other parents talked them up, and because the therapists were very good at getting to parent meetings and handing out cards.

Bottom line, I personally have found that other autism parents have provided me at least as much stress (and unnecessary spending) as support.

If you’ve had different experiences, that’s terrific; maybe others will chime in here.

Lisa (autism guide)

July 16, 2009 at 9:17 pm
(11) Sandy says:

Here’s my chime. I think that list is pretty good and I too have met just those stressors of parents of those with autism. I’ve been at support groups, and have friends who wont go any more due to pushy parents. What those parents forget is each child is an individual, and for instance what I chose for my son may never work but for a handful of others, so why push it unto others? That certainly is a stressors and at those meetings, you’re better off never bringing up certain topics.

Another stressor I have is school and a child who doesn’t fit it. I don’t wonder about when he grows up or when I pass away; my worries are more about what’s going to happen tomorrow!

July 16, 2009 at 9:24 pm
(12) Lin says:

I have to disagree, Lisa. Raising my child with autism isn’t thankless at all. In fact, it is quite the opposite. It is one of the most, if not the most, rewarding entitlements I’ve ever experienced. Stressful? Yes! Difficult and challenging? Oh, yah. Frustrating beyond words some days? Yes, that, too. But…Thanksless? No. Never! Not for me anyway. I am constantly rewarded.

July 16, 2009 at 9:33 pm
(13) autism says:

Lin — I don’t think “thankless” and “pointless” are the same thing at all.

Lots of people work hard and receive direct applause and thanks for the work they do. Others work hard and see outcomes – but are never thanked.

Moms in general fall into that second category. Moms of kids with autism, tho, work harder — and often their kids don’t think to say “thanks” even when they feel it.

I certainly don’t feel my job as autism mom is pointless! And it’s often very rewarding indeed. But it’s not a job that seems to merit much in the way of direct thanks!

That’s okay — but it can be tiring.

Lisa

July 16, 2009 at 10:25 pm
(14) Sandy says:

Lisa~ that is very true of many autism mom’s. Some kids are non verbal and a thank you is only a dream come true, while other kids are verbal and my kid would rather throw up than to verbally thank me for squat. Parenting should be rewarding regardless for any parent however we who have children with autism, our parenting is different but still can be rewarding, just in different ways. For instance I don’t find my rewards always from gestures from my child since those things are most difficult for him. I find it in other ways. I do find stress within him directly, and I don’t always think I am singled out aside from other parents. I think all parents have stress, ours is just different but I have to say that’s a pretty good list this blog offered.

July 17, 2009 at 12:43 am
(15) Leila says:

The biggest stress factors for me: how stubborn and non-compliant my child can be; the fear for his future; seeing other kids being mean to him.

Other autism parents are not critical in my life, and I have the freedom to take or ignore their advice. So, they wouldn’t be in my list of major stress factors, no.

July 17, 2009 at 1:26 am
(16) Autistic Living says:

I think a main source of stress is all the TALK about autism, and limited action.

Why I’ve watched hundreds of blogs and websites sprout up for autism in the last couple of years. So many that I scrapped the one I was working on. It has become almost a cliche. Years ago I saw a need. Now I see another need, that isn’t even close to being filled.

What’s the new need? Action

Well, the new need is the old need, but now we need it more than ever. I keep coming up with all these ideas, but haven’t the slightest idea how to, or the means to execute them. Sure, maybe I’m better at making excuses than I am making things happen, but it doesn’t change what’s happening all around us.

Lots of talk, not nearly enough action.

Walks? A fruitless activity when it comes down to it. It’s generally for organizations, and rarely gets back to the families.

Rallys? Another fruitless effort. Some of the things I’ve seen parents come out for are so trivial, and so friggen obvious that I wonder why a politician needed to be told to take action. My opinion is we need to breed more politicians within the community, and then get them elected. Trying to convince politicians that aren’t personally affected by autism is a lot of work for limited reward.

Support groups? Nonsense. We don’t need support groups, we need SUPPORT. I don’t need to talk with other parents about how hard it is to deal with my son. What I need is for treatments to be covered by insurance, and gluten free food to not be priced into the stratosphere. I also need some of these treatment providers to stop charging $100 an hour for speech therapy for some 22 year old little twirp fresh out of college that barely knows how to speak like an adult herself.

Insurance? LOL. Need I say more?

Education? LOL. We need to fight for scraps that we ALL know are insufficient. Many of these kids are capable of talking, and SHOULD be going through 4 hour sessions of speech per day at the minimum. Instead we get a few hours a week if we’re lucky, and a few hours a month if we’re not. The school districts spend more time finding new ways to screw these kids out of services than they do on the services themselves.

Autism parents aren’t simply “stressed”, they’re screwed. Where is the bulk of the screwing coming from in the United States? Our government. Local, state, and Federal.

Maybe we need to elect nothing but firefighters to public office?
http://www.youtube.com/watch?v=VO6DORwBzuA

July 17, 2009 at 1:26 am
(17) NOT Catherine Maurice says:

Lenny – I love you terribly. But, I’m with Lisa on this one. The other ASD parents who try to push their solution down your throat kill me. They prolonged my grief.

The worst? The woman who runs our local parent support group? Her son “recovered” with ABA alone “just like Catherine Maurice”. She actually believes that every child can recover if a well designed ABA is started early enough and if the mom “generalizes in the home” at all times. Note: her son has ZERO bowel issues, ZERO gross motor issues, never touched the diet and this kid had a few words and was already hyperlexic when they started. Lucky them.

This hope/belief that this was true drove me into depression, as clearly, I wasn’t the perfect mother as well (and we were doing the biomed on top of everything).

For a while there (when I learned otherwise: that, in fact, I’m the best parent I can be), I would haunt the parent support meetings… and when she said… “read Catherine Maurice’s book”… I would counter that I hated that book and what that book did to me and my recovery from the shock/depression. And I would go on and on re: health issues and it isn’t so simple as ABA. I couldn’t bare her doing this to another family.

Now, I don’t have the energy for this anymore… but she’s still there on her own personal “I’m a perfect mother” ego trip (and driving people away from ever coming back to our chapter – as many are so offended by her – note: she’s also belligerent. But, as we all know, every month, there are new parents for her to sell her toxic ego trip. But, she’s very wealthy and she supports our chapter in a big way – so there she stays).

I think that parents of recovered children who believe that their children recovered solely because of their efforts (no matter what those efforts were) are the flip side of the refrigerator mother coin.

July 17, 2009 at 3:09 am
(18) sylvia solis says:

I have a 9yr old autistic son,and a 16yr old and 6yr old son with no developement issues.We all sacrificed going places or having to bite our tongues at other people’s comments or stare’s.But most of the stress was relieved when we stopped caring what other people thought of our son and just said what was on our minds at the time when people made comments or stared at our son,without even considering how rude they were being.Yes being a mother of an autistic child is stressful,but I am a firm belever of “what doesn’t brake you,makes you stronger”&”everything happens for a reason”.My family,friends and co-workers are more aware of children and young adults with special needs.My stresses are mainly dealing with special education and how they try to cut off services my son is entitled to.

July 17, 2009 at 4:17 am
(19) Lin says:

There are many ways a person shows appreciation and is shown appreciation. Appreciation = thanks.

Just my opinion, if I’m entitled.

July 17, 2009 at 6:53 am
(20) Bill says:

reading your stupid blog causes stress on me

July 17, 2009 at 8:27 am
(21) Sandy says:

Autistic Living~ things are far more complicated and not so easy. You can have many politicians effected by autism, but it isn’t only up to them to do much. There’s also a budget, and always higher-ups than them to not vote for something.

Same with the school. The school cannot be blamed for less services and children not speaking. They also have a budget and schools are not medical anyway. They also have to balance the amount of services and still offer plenty time for academics. Then you have a large amount of kids in a school and they all need time for services with someone, and that someone generally has a huge case load.

You may not think walks and rallies are worth much, but they do bring a large amount of attention to the community and in the end, a large amount of families are getting together for ‘action’ and a purpose.

And support groups. One must remember there will always be new parents to autism and even if you don’t find them useful, many do need to vent to those who understand what it’s like to parent a child with autism. It’s not only vents either, support groups can offer humor about our kids, and hope to new parents that even if we have very little to offer our child by means of this or that, our kids can still progress. If there wasn’t any “22 year old little twirp fresh out of college” regardless of their hourly pay, we’d have even longer waiting lists. I am glad these kids are going to college to help disabled kids.

As an autism parent, I don’t feel screwed at all. I personally don’t blame our government. Local, state, and Federal. We weren’t planning to have a child with a disability, and the above 4 wasn’t planning on us having them either. Autism isn’t the only disability where services are being sought or needed. The parents who had it the worst were past generations. We have so many more options than they ever had and we also have IDEA and FAPE which they never did. I doubt those past generations had reimbursement for educational placement when they couldn’t enroll their children in public schools. When you have a child with a disability, there is no silver platter and it will never be easy street either. No one is really to blame for that, since what is being sought isn’t always of the majority, it would be difficult to come up with a standard. Where one may not find the need for things, other’s will. The action I might strive for may not be the same as yours. My child’s needs I’m sure are different from your child’s.

July 17, 2009 at 10:27 am
(22) Autistic Living says:

Sandy ~ No, things aren’t all that complicated.

When AIG needed money, it wasn’t all that complicated. Things got done in a few weeks.

When Bush wanted to go into Iraq, it wasn’t all that complicated, he just pushed it through.

When politcians really want to get behind something, the results come in days or weeks, not years.

YES the school can be blamed. Speech instruction is not just a medical service. When I was a kid I was forced into speech for my “s” sounds. They certainly know that these kids have the potential of reaching a full vocabulary, but they don’t want to pay for it. Instead they would rather picket outside to increase their already inflated salaries that they have everyone believing are so low. You can’t get more money by simply asking for it. They DO need to do what’s right, even if it means bankrupting the districts. That’s how you get more money.

No, walks serve no purpose other than a small social aspect, and to line the pockets of the organizations. How much money has Autism Speaks collected, and how much has actually benefitted people with autism? So far it has been nothing but a cash cow for the scientific community’s wild goose chases.

No, a 22 year old twirp fresh out of college is NOT worth $100 an hour. Especially when the organizations that pimp them out are only paying them $18 an hour out of the $100 they collect.

…and finally no, a support group isn’t worth the trip in most cases. Many of these problems can’t be talked through. They’re real problems, that deserve real answers. While I’m sure it’s great for some as far as playdates and learning about area resources, I don’t see a support group as being a true resource for a family dealing with autism.

Are you even a parent? Get real, and don’t come here lying to the rest of us. You just defended what almost everyone here is having problems with.

As for the parents of past generations. You can take the uphill both ways in the snow crap and feed it to someone who wants to hear it. Everything was worse 20 years ago. That’s not an excuse for sitting idle.

I pay taxes. I’ve paid a LOT of taxes. I pay for fat slobs who sit home in their trailers all day on welfare. I pay for other people’s kids to go to school, and fund loans for people to open businesses. I pay for roads I’ll never drive on. I pay for Rivers I’ll never fish in. I pay for businesses I’ll never patronize. When I signed on to be an American Citizen at birth, with that came responsibilities for both myself, AND America. I pay my school taxes. I’ve paid them for years. Years WAY before I had kids. I paid them with the understanding that no matter the need of my child, they would be reasonably met by the school I was paying into.

Yeah, I didn’t plan on having a child with autism. Those are the breaks. The school however doesn’t give tax breaks to those who put their kids in private school, so they shouldn’t offer substandard services to my child because he needs a little more than the rest.

Seriously, stop trolling the blog and go back to whatever fantasyland you came from. I guarantee you’re not a parent, and more than likely are some sort of professional working with autism.

“We have IDEA and FAPE.” lol. Unreal.

July 17, 2009 at 2:47 pm
(23) Sandy says:

Iraq and AIG isn’t even comparable to any autism topic. A recession and war is going to make every American hurt in some way or another and if it was a choice between families becoming homeless and services for my child, I’d choose for those families to have a place to live. But that’s just me, I know I can do many things for my child at home. I’m not sure where you might think the money will come from for the action you’re looking for, but some people do use rivers and not every one on welfare are slobs. I grew up on welfare and we didn’t live in a trailer and there was not nearly enough money to become fat. The action you’re looking for sounds just like welfare, just for children with autism. People will get that same negative stereotype for that as you have for current welfare. I also had speech when I was in grade school, for my S’s and R’s. I went two days a week for 20 minutes, about what my kid has always gotten for services. So at least 30 years apart, the services have changed little when it comes to what’s offered at school.
Yes, I am a parent and my child has autism. I am also all over the net, many have seen pictures of us and know all about us. Your guarantee is wrong. maybe I can add this to my autism-parent stress. I am just not as negative as you are. I also believe because I pay taxes, my child isn’t owed anything or the Gov, Feds and City levels are to be blamed because he has autism. There’s many things I’d love to do for my child and cant afford, autism or not. If I really wanted those things for him I’d get a second job. Had I wanted ABA for my child, I would had needed another job, but my child progressed just the same without ABA. Just because I have that opinion, doesn’t mean I cant possibly have a child with autism. Anyone at any time of life can become disabled, and if they do, most of those families thereafter struggle all the way around. There is no bail out and there isn’t going to be. Try becoming disabled as an adult, way less services for them.

If you really wanted to see action, you wouldn’t be here venting/ commenting on a blog and attacking people who are on welfare and therapists income. You’d find a way to make that action happen and it’s not going to happen on the web.
I hope you have a nice weekend.

July 21, 2009 at 2:17 pm
(24) Stephanie says:

I agree, you hit it right on the target Lisa Jo.
I experience all of these problems. I have a 10 year old son, with High-Functioning. It was easier when he was younger, I find the older he is it is getting harder.
1. I have no $$.
2. I have guilt and daily anxiety
3. “Red Tape” I don’t care anymore about who caused it , where it came from, I just want a cure and to make it go away fast!! Lets just solve it and stop laying blame!!
4. The “other parents” this is interesting, we are all so stressed out, that the vigilante parents are trying to cope in there own ways they get on our nerves. We all just need to be there for one another and yet we can’t because we have such different cases to deal with. Even our own friends with neurotypical kids can’t understand us.
5. The Media..See #3 Red Tape.. I just want a cure…
6. Loneliness….It is soo sad not only are our child lonely so are we. It is hard breaking, I know when I became a mom, I never thought in a million years I would be the outsider mom, with the outsider child, looking in the window at the other families, wishing for what I can’t have for me and my child.

July 22, 2009 at 2:19 pm
(25) majvaldez says:

what people tend to forget that autism is not a disease that can be crued like cancer but the fact that some parents think that it can be cured is false hope what i have found alot of the times what has worked for me is using creative ways to help them along with coping skills and always praise them for their best effort and always reassure them you love them and to always have an open mind of the way they learn and always think outside the box which is non-conventional where most of the time everybody does the conventional way of theaching them where we all learn differently

July 27, 2009 at 12:04 pm
(26) bobbie says:

You hit the nail right on the head!

July 27, 2009 at 7:53 pm
(27) Ros Kapj says:

Anyone who has a young Autistic Child presently is a lot more fortunate than my Family was in 1993.
We found ABA therapist but they exploited us and my Son. We had no choice they got him to speak. He spent the Year before in a Therapeutic Nursery were the incompetent Speech Therapist could not get one consistent sound from him.
We had two ABA Psychologist run an ABA Program from my Home. We payed out of pocket and received nothing back from Insurance or the District. They were undependable often late and always catered to the Children who’s Parents had the most money. We were at their mercy and they had no morals.
When my son was Four we helped them to start the New York Child Learning Institute in Queens New York. All the Parents called me to find out if they were good. We wrote letters to everyone asking the State to fund their school. We had to beg to get in and payed for the School out of pocket for Months.
When my son was Eleven they said he had to leave the School because our Yearly donation was not big enough. There immoral Director said, ask your Brother In Law to Donate more.
My Son never received the help at New York Child Learning Institute that wealthier Children did. I had no choice because NYC. Teachers are not trained in ABA.
My Son has been in another ABA Program since Eleven and he has made much Progress. Michigan keeps special needs Children in School until Twenty-Six ; But my Son is Nineteen and only has Two Years left.
I will always be angry with New York State Education Dept.,the incompetent Teachers and Psychologist in NYC. They failed my Son and many more. They get payed to be incompetent.
I fear what my Son will have after Twenty-one.
My Son is very intelligent but he is not ready for life without support ; he needs more time to learn.
I’d like the incompetent Psychologist and Teachers of NYC to have their own Autistic Children and Grandchildren. What Therapy would these imoral people choose?

July 27, 2009 at 8:47 pm
(28) Ros Kapj says:

I wish someone out there new how to help me.
One way you can all help is to ask your Congressmen/Women to support the ATAA bill in Congress. For details go to autismspeaks.com web site. We all need this bill to pass.

April 7, 2010 at 11:19 am
(29) Sharon Jones says:

You are so, so correct, I mean you have covered everything. Especially about the costs and the loneliness. I keep hearing about how many children have autism, yet the only one I know dealing with it and living day to day with it is me. My son is autistic and 13 and I have cried too many tears. I always thought I lived my life being a fairly good person–I don’t know what I have done to have to deal with this heartache. It is just too hard to deal with sometimes.

May 6, 2010 at 3:49 pm
(30) Amby says:

That sounds about right for most of the parents. My kids can talk, have high IQ’s, and can function in society. I avoid the other parents. I watched the ABA, I picked those skills up like a sponge, and used those skills at home. I don’t spank bec. it doesn’t work. I do time outs, and rewards. My kids are well behaved in public!

June 22, 2010 at 11:07 am
(31) Malia says:

I see this post has generated a lot of comment already. I honestly haven’t read most of it and am really just giving my impression of Lisa’s post. I like that it shifts the focus away from the child’s behaviors inherently being stressful somewhat onto how we parents process everything going on around us about autism. I can honestly say – been there, done that to most of it (and even to some of the additions made by a few of the comments I have read).

I think it ALL can add stress and perhaps the cumulative result is more stress than parents of children with other disabilities have to deal with.

So, the problem I’m stuck on and can’t seem to solve is: How do we go about working towards reducing, coping with, or managing these notoriously high stress levels for both ourselves and our children while still avoiding offending each other and our children with whatever thoughts and opinions we have on specific issues related to autism?

June 22, 2010 at 2:47 pm
(32) Suzanne says:

Stress? Yes. Getting better lately. For us, the biggest thing was when he had behavioral outbursts which resulted in chaotic situations in our life. Once, when I was finishing painting our dining room, I had hammered the lid on the can and just as soon as I let go, our son grabbed the can, pulled it off the table and the weight of the paint popped the lid and we had paint everywhere (saturated the carpet). This happened while I was standing next to him. And there is so much more. Nowadays we tell these stories with good humor, try to remain calm no matter what happens, redirect, look for sensory solutions, teach, teach, teach. Truth be told I find the “challenge” of autism to be exciting, but dealing with the realities of autism is very stressful unless you figure everything out. Does that ever really happen? My son is too young yet for me to know.

On a very positive note…my older children are involved with VBS at our Church. I stopped taking our autistic son anywhere near it 3 years ago, because it was too stressful to deal with him there. BUT, yesterday I took him in during the end of the program – he was calm, smiling, was given a balloon and joined his brother in chasing kids around the room. The experience was relaxing, beautiful and the complete absence of stress!

June 22, 2010 at 3:30 pm
(33) Mik says:

I don’t worry about other parents of ASD kids. When I’m asked for advice, I say, “You figure out what works for your kid. When it stops working, you figure out something new. The hard part is the “figuring out” part.”

I agree with several that Fear, especially for the future, is a major concern.

I really have no adult friends outside of work. Does that mean I’m sequestered because of my child…maybe. But it’s my choice to keep life simple so I can focus on what works for my kid.

I know some great parents of ASD kids, and we all try to share notes…especially about the school system….so we can be a prepared a possible. We all seem to agree, do what works for your kid.

Hey, look at that. A strategy that works for both my neuro-typical and ASD kids. :-D

June 22, 2010 at 3:47 pm
(34) Leila says:

I think the autistic behaviors do cause lots of stress both for the child and the parents. The massive tantrums, especially as the child gets older and you can’t just pick them up and carry them outside. Sometimes you can do everything to prevent the tantrum triggers, but every once in a while the child may get upset at something and, boom.

In terms of “external factors”, I’d say the mains stressors for me have been mean kids/bullies and so far just one teacher. The other parents of autistic children may have different opinions about causation but I can always find something in common and bond.

June 22, 2010 at 4:18 pm
(35) Sandy-2000 says:

It seems there is another Sandy present- so I’ll add the year to when I came to this blog.

About the OTHER PARENTS, Lisa got it dead on. It’s not so much blame at all but in a sense it is. While there are some parents who are helpful and not over-bearing, I have had my fair share of those who were over-bearing and made me feel not doing what they were was doing my child wrong. If those other parents stopped to think how they were making others feel, maybe they wouldn’t cause the stress they do. I can also relate to the sales pitch, it’s happened enough for me and you wonder if they truly want to help, or just sell you their products. Let me tell you, when you choose not to buy their products, you never hear from them again and when you see them at a meeting, there maybe might be a hello but that’s it.

I don’t believe it’s the actual child with autism causing all the stress. I am as happy as can be during the summer with just ‘us’ and no one else to throw a brick in the mix. I think the people I deal with through out the year cause much of the stress than my son ever does. I think people who we ran into at the store cause more stress, had they only thought before they spoke. My own family can causes stress.

I don’t have a lot of fear going on. The way I look at it is why worry how my son will fair as an adult and would he need help? I could die tomorrow and spend my day fearing that. I child will either be able to live on their own or not, or with assisted living or not. My son is going to do the best he can regardless and if it means he needs assisted living, that could happen if he was typical and in a car accident. If I have any fears, it’s during the school year when my cell phone rings.

June 22, 2010 at 4:24 pm
(36) C. S. Wyatt says:

Most of my autistic traits are only stressful to me because other people react so poorly. Those that do stress me, the sensory issues, are an issue only because decades of “experts” kept trying to desensitize me — what they wanted was for me to “act” like everything was okay, while inside I suffered excruciating pain and misery. But, if I acted normal, it pleased all the adults around me. Eventually, I would be too exhausted to act as demanded. The pain won when I was tired.

I was born in the 1960s. My parents suffered every idiocy of the last 40 years.

My medical care and needs left my parents without much. We ended up in a single-wide mobile home, though we did upgrade to a double-wide eventually. My parents sacrificed any hope of normal career paths.

I still hear the voices of two teachers discussing me as the result of “white trash/trailer park trash” parents. I developed, and still have, a deep loathing for many of my teachers.

My father’s family was Pentecostal. I heard people talking about what sins my parents must have committed to have a child so possessed. To my parents, they would say what a miracle I might be, behind their backs they wanted to expel the demons.

I come very close to hating the therapists and learning “specialists” of my youth. Hours and hours of repetition. Speech, reading, physical therapy, all left me deeply affected by their supposed treatments. The real result? Convincing me I was stupid and inadequate.

My parents had to fight the schools, the disdain of teachers, the doctors, the therapists. They fought alone because the 1970s were “medieval” by today’s standards.

As an infant, my mother moved my limbs several times a day as a gently physical therapy. She read to me (and my sister) constantly. My family never assumed I was a lost cause and waste of their time. This despite being isolated and struggling to survive.

How did my parents deal with the stress? I don’t know. My father was definitely angry at times. By the time I was in junior high, my mother took a job working at a school for students with special needs. My father went back to school for his AA and ended up working from basic nursing to hospital administration. They did these things and showed me I could do anything — without and despite the idiots.

I went into education and research to try to change attitudes and practices. The good thing about having made it through the doctorate is I can say things during an in-service training and people take it seriously.

What is sad is that my mother, with a high-school education, knows more about teaching and raising a special needs child than I will ever know. She stayed at home through elementary school and made my life possible. I wish she had received some support from the schools or other parents, but she and my father are amazing people.

Most of your children probably realize you’ve made sacrifices. It’s hard not to notice, even by second or third grade, how the world treats your family.

I can’t offer ways to cope with the stress. I can only say it is often worth it in the end.

And no, I’m far from “normal” or “recovered” or whatever. My wife says she often feels her “second job” is to reduce or avoid stress in our lives. Again, she does this without a lot of outside support, but I know my mother and father thank her often and would do anything for her. They know I’m a challenge.

June 22, 2010 at 4:44 pm
(37) Sandy-2000 says:

C. S. Wyatt~ not sure if that was meant to be beautiful or not, but it was. This is why I carry little fear about the future, no one can predict it. My son may grow up and be able to write something just as you have.
Thanks a lot for sharing that.

June 22, 2010 at 4:47 pm
(38) Diane says:

It is not my child. It is those around us. As I began to navigate the world of therapies, shortly before he turned 2, I realized that his behavior was tremendously influenced by the attitude of those around us. This realization became my best tool as I searched for the right programs for him. By the time he entered kindergarten I my trust in him was so strong that I relocated to place him in an inclusive classroom, because that is what he wanted. His progress has been miraculous, far exceeding any predictions based on numerous evaluations. Many kids on the spectrum need certain accomodations to function best. My son showed me he needs acceptance and high expectations. I suspect that would be a winning combination for us all.

June 22, 2010 at 5:52 pm
(39) zusia says:

Three things:

1) Lisa, your list is spot on; only missing one thing:

2) Parents of children with autism are more likely to have inherent traits themselves, making functioning as a parent of a child with a disability more stressful. Also, parents of children with autism are more likely to have other compromising conditions such as ADHD, anxiety disorders, depression including bipolar disorder, or other mental health issues.

3) I totally agree with what Sandy wrote:

“As an autism parent, I donít feel screwed at all. I personally donít blame our government. Local, state, and Federal. We werenít planning to have a child with a disability, and the above 4 wasnít planning on us having them either. Autism isnít the only disability where services are being sought or needed. The parents who had it the worst were past generations. We have so many more options than they ever had and we also have IDEA and FAPE which they never did. I doubt those past generations had reimbursement for educational placement when they couldnít enroll their children in public schools. When you have a child with a disability, there is no silver platter and it will never be easy street either. ”

Like Sandy, I don’t feel entitled to more than what other parents of children with disabilities get. I’m very embarrassed by the attention to autism when I’ve got friends with kids with much more severe and debilitating conditions. My son is also embarrassed by all the attention to autism.

Parents of children with Down Syndrome understand that while it’s not a hereditary condition, it’s a genetic condition with inherent limitations and very often accompanied by health issues.

Most parents of children with Down Syndrome accept their children and support them, without making a huge fuss. They accept that varying degrees of mental retardation are part of their child’s syndrome. They ACCEPT this. And they work around it the best they can.

We can learn a lot from these parents.

June 22, 2010 at 6:12 pm
(40) zusia says:

p.s. Whoever is using the NOT Catherine Maurice screen name, I applaud you. That made me truly laugh out loud. I have never read such a self-centered, self-indulgent, vapid author.

June 22, 2010 at 10:55 pm
(41) Bill says:

I am endowed with Asperger’s Syndrome.

Every day, without fail, I use a Google News search to find any new information on autism or Asperger’s. Almost daily, I get a “hit” from somewhere in the English speaking world of an autistic child lost or drowned or run out into traffic, etc. About once a week the parent of one of these errant children gets accused of neglect.
About once a week I see the story of a parent who got in trouble for restraining their child in a manner which neurotypicals deemed to be child abuse.
So if your autistic child gets loose, you are at fault, and if you restrain your autistic child, you are at fault.

My oldest son, who I now realize to have profound Asperger’s or high functioning autism, had no natural circadian rhythm. You could not put him to bed and expect him to stay there. Combine that with his obsession for sharp objects!

Stress? STRESS? Yuh erp eek wha ha STRESS?

This subject today is recycled. in the year since I wrote (2) Bill at the top of this web page, my son has been arrested, a very good (and expensive) lawyer got him off on probation, and the threat of going back to jail if he violates probation has forced him off drugs and alcohol. Now that he has hit bottom, his thirty odd year fight to not conform with neurotypicals may finally be over.

I hope.

Stressed? Are you kidding?

I worry every time the phone rings; “My roommate is dead; he overdosed- what am I supposed to do?”

I discussed friends and lifestyles with him recently- we counted it up- seven of his “friends” dead from drugs or suicide, one a vegetable after choking on his vomit after passing out from drugs and alcohol.

He wants to not conform. It is his identity. He is proud to not conform. He rejects the entire neurotypical world.

Wash dishes? That would mean conforming.

Stress?

Stress?

Stress?

While the world sleeps, he walks the dark streets looking for scrap metal.

June 23, 2010 at 1:55 pm
(42) Anne says:

Wow! I am learning a lot from reading this blog entry and comments. I am a SLP and work with children who have autism.

I want to comment on the part about people “not believing.” I have run across this numerous times. It must be very frustrating when you are trying to educate educators about your child and they think they know more.

I hope it is okay that I have joined your blog.

Anne

June 27, 2010 at 4:59 pm
(43) Lisa says:

Hi, I’m a mom of two very special autistic boys, 10 and 12 years old. I luv them very much and proud each day of you they are and will be. Our life is stressful yes, but who isn’t stressed. Is it added stress on my marriage, yes..reading all these blogs makes me soo sad!! Get over it and be a parent!! Typical children come with issues too, drugs etc.
Life isn’t easy, so please stop thinking your child with autism is the cause, maybe its just the person you sre. If you had typical children I’m sure you would be crying over something else. Try to see your child with AUTISM as your child and not a LABEL!!

June 28, 2010 at 9:28 am
(44) tracy says:

Yes you are correct – I wish I had a t-shirt with all the data so that everyone around would under stand

June 28, 2010 at 10:16 am
(45) Erin says:

Lisa (43). you do not have any of these concerns? Part of being a parent can be discussing with other parents the stresses of being a parent, especially with parents who deal with similar situations and issues. The label just identifies some of the issues we share or have in common. I know I cannot discuss with family or other parents of children not on the spectrum these issues because they don’t want to hear it, nor understand it.

And one other thing I cannot “Get Over”: the feeling I have that no one wants to get too close to us or my children with autism, especially the one more severely affected because they are afraid we might ask them to raise them if something would happen to my husband or myself; when I have already experienced cancer and had a father whom died of cancer at a young age. They know parenting a child with autism is different and a life-long responsibility.

I just ask you to avoid the blog if it upsets you rather than telling me to get over it, because I appreciate a place to “vent” and to share opinions and experiences in dealing with Autism.

June 28, 2010 at 11:44 am
(46) Bette S Baysinger says:

Why didn’t they include fathers in the study? When the father is not actively parenting the life experience of the single mother answering these question unidentified seems like it would skew the results. I guess I should look at the study first though to see how they handled this variable.

I heard the most interesting interview on Coast to Coast with William Stillman who mentioned you, Lisa, I recall.
Love
Bette

June 28, 2010 at 1:23 pm
(47) Mama Bear says:

Lisa~

I think the variety of comments here show one of the biggest problems with ASD right now…everyone wants their own banner. A parent could end up with whiplash from going from one ASD cause, rally, walk, opinion, “cure” or new idea, therapy, group, political group, etc. to another. I have been to many groups, political meetings, educational conferences and the like where more time was spent trying to sway people to one side versus the other rather than joining forces and DOING something for our kids. It is very frustrating–for ALL sides. I’m not one to limit ideas because what works in my home may not be right for your home. However, when we can learn to embrace the ASD DIVERSITY, then maybe we can move forward.

Also I would like to add to your already awesome list. You really did accurately depict some of the difficult stressors for parents who have children with ASD. I have two boys with ASD. Unfortunately, I had to really work to get the professionals to really LISTEN to my concerns–which obviously turned out to be valid. So I think PARENTAL POINT OF VIEW needs to be added. This covers the doctors, specialists, therapists, educators who are quick to discredit or openly dismiss what a parent has to say. Last time I checked, there wasn’t a specialty course offered in my children–so I just might have something pertinent to add. Please give me the courtesy of hearing me out if you would like the same in return.

The other item for the stress list is OTHER FAMILY. I would love it if my family “got it.” They don’t. I have understand it; but I don’t have to like it. No, this isn’t going to “go away if we ignore it or don’t talke about it.” (Actual quote.) It is who my children–your relatives–are. Get over it and deal. Like many other people out there, we have learned new languages, therapies, routines, schedules, and ways to support our children. Our families question it without really making an effort to know WHY we do this. It isn’t becuase I enjoy packing a seperate meal for my kids on holidays or to give my self “busy-work.” Family, even when they mean well, can be a very big stressor.

June 28, 2010 at 5:29 pm
(48) Penny says:

My biggest stressor is the difficulties my non-autistic girl has; if she has friends around, they can’t cope because my boy muscles in and starts hitting people; she gets no relief from him as we have no respite care in our area, and sometimes he just goes on and on at her and drives her crazy.

And of course he has no friends. I have a few, some with autistic and some with non-autistic children, but if children come to play with my boy, he gets all excited and ends up aggressive, and they never come back.

Watching my sad children has to be the hardest stressor for a mum.

June 28, 2010 at 6:45 pm
(49) Joanna says:

Lisa, to me the stress from ‘other parents’ will instead be ‘the society’ at large which are ‘neurotypical’. The people who will judge what bad parents we are for the problem behaviors of our children.

Also, the stress might come from the people working with our children. Be it Behavior Consultants, Speech Pathologists, Pediatrician, Occupational Therapists, you name it, Line/Lead Therapists, etc. Some are not equipped with the skills they claim they have. It is devastating when we hire the people who cannot improve things because we are then wasting our child’s time, our money and energy.

With Canada, the main culprit or source of stress comes from the government. A therapist once told me, “Having cancer is better than having Autism in Canada, because the first is covered by Medicare but not the latter.
And now, the government is cutting back the already little welfare for our kids.

June 28, 2010 at 8:58 pm
(50) Sara Lou says:

There are many things that are stressful about having an austistic son (he is five). I mostly worry that he won’t be happy or accepted if he goes to mainstream school. His two older brothers are wonderful about including him in almost everything and I hope it continues and they never resent him. I feel guilty sometimes that we didn’t notice something was wrong until he was three and a half. He made eye contact, said simple words and loved to be touched and held. I did not figure it out until he was three and his speech did not progress and he started having temper tantrums and lining up his toys. He was still repeating phrases back instead of answering my questions. Fear, uncertainty about his future, and the deterioration of our finances have been the worst part. I want him to be happy and have a good life. I have lost my sense of security that I used to have – I find I am living in fear most of the time. Friends and family have been understanding and I have not felt judged by others but it is still hard.

June 28, 2010 at 9:44 pm
(51) anne says:

I think sadness was left out of the study as it is one emotion that everyone can relate to no matter what the issues with their child happen to be. As a parent, my heart hurts when I see the self-injurious behavior and the meltdowns that occur too often. I am sad occasssionally and often wish things were different. I have almost reached acceptance of my son’s disorder but still am affected by the hardships we as parents of a child with autism must endure. The struggle never ends.

June 29, 2010 at 12:00 am
(52) vsheehan says:

Lisa
In your case you have the added stress of the comment section. Wow, it has gotten really contentious in the comment section lately. The most visceral seem to be aimed at you personally. So Lisa you deserve an extra (((HUG))) today.
By the way I think you nailed most of the stresses except for the Fear of will this person be living in my basement or the fear who will care for them when I am gone. I guess you could say it’s the fear of the future.

June 29, 2010 at 6:45 pm
(53) ileana morales says:

HI lisa, first of all, I really thank you for spreading awareness about autism.and yes, it is very stressfull to raise my son .For years I wasn’t able to go eat at a restaurant. I remember one day, he was acting up and everybody was staring at us,I turned and told everyone…sorry, he has autism…and one person said: autism…He is just a spoiled bratt ( luckly my husband,left the restaurant before this comment).- thats why your work is so important…we need people to understand more about autism and what parents we go thru.

June 30, 2010 at 11:16 am
(54) Jerry says:

The loneliness issue is the most profound. As parents, we are almost forced to live in another reality. A reality that you described perfectly. One thing you left out is that other parents, in so many cases, don’t want to be involved with you and your autistic child. They want their normal life and isolate the parents in many obvious and subtle ways.

July 4, 2010 at 8:55 pm
(55) purpose says:

I am a mom of two beautiful boys,one typical and one with asd. I love each. We use two sets of rules at our house.Its hard most of the time but we have to protect our youngest son.I believe that he has a purpose to glorify God!I have to believe that!

July 5, 2010 at 7:05 am
(56) julie iurincich says:

my sister child has autism .my sister is a self centered bitch.there are other grand kids besides chaya but my sister doesn’t want my mother any where near them.by daughter is quite bright gets good report cards but narella is so jesulous emma doesn’t get a mention its all about chaya.may be you should do a study into why parents of autistic kids have to be such arseholes to there families.julie iurincich

July 8, 2010 at 2:57 pm
(57) Estela and Santi says:

I am a single Mexican mom, and my son Santi is autistic, he is 5 years old and still wears diapers and can’t talk. He is very sensitive and the school doesn’t want him because of the diapers, they don’t want to change him.

I don’t have much money and I live in Mexico where we don’t have any insurance or help for this condition. We have a neurologist but he is old and only prescribes a different drug each month.

I am tired, not with enough money always, and not much support. I love my child and I want to have enough money to get him into stem cell treatment, which is expensive and we have to go to Germany for it. The US Consulate has already denied us visas to go to a US hospital, so our situation is very sad.

I understand that we have only 3 more years to get Santi some kind of cure, so that he isn’t like this all his life.

Please visit my blog and follow me on twitter so we can grow a community to help each other.

August 26, 2010 at 4:04 pm
(58) wrongplanetnotfanof says:

Parental blame game? Shoot, take a look at a guy who terrorizes mothers of autistic children on the internet. I guess you call them “cyberbullies”. This guy has a website called: “The Real Phil Gluyas” This site is obsessively dedicated to attacking people like a mom who posts videos of her severely autistic son on youtube under, “kgaccount” – Gluyas calls her “The Mother who fails”. He’s supposedly a man with Aspergers, of all the irony. He seems more like a man with mental issues. He’s not only one out there attacking parents of autistic children. They are all over net. Each time parent posts videos on youtube or blogs or anywhere, these trolls like gluyas come in for the attack. This is truly the height of hipocrisy, given people like Gluyas, who claim to be neurodiversity people or advocates, are really, behind the scenes, terrorists on the net against parents raising autistic children or sibilings who are advocating for their autistic sibilings, as Gluyas attacked one lady over and over again who has an autistic brother. Something aint right here with gluyas and others like him. Something is very wrong. As in wrong planet.

April 22, 2011 at 8:27 am
(59) TLPG says:

The comment from wrongplanetnotfanof contains libel and should be removed as well as ignored.

October 9, 2010 at 3:15 pm
(60) nani says:

i am from iran i have one asperger son . yes dear you right i agree with you . these thing in iran are as hard as your country.

June 2, 2011 at 3:46 pm
(61) S says:

You brought it all to a point. It isn’t just the challenging behaviors and mystery of why our children act or do the things they do. You even helped me realize why I am so stressed!

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.