Autistic Spectrum Disorder child?

sam52

I have recently been amazed at how many of us with a bc dx are the parents of a child with ASD.

My son is now 26 and was dx with Asbergers at age 13. Life was, and still is, very stressful - I am a single parent and my son still lives at home. He was also dx with epilepsy just over a year ago.

I have always been convinced that long-term stress is a contributory factor in bc.It seems that research is finally admitting this now (albeit twith mice!)

I would love to know how many of you are also parents of a child/adult child with ASD.

Sam

Everlastpink

I was just thinking the same thing. My son is 7 now.  His current dx is PDD-NOS and he has come a long way.  We were lucky that he received an early dx and that we were able to afford ST, OT, ABA for him.  He is now mainstreamed at school with some special ed help.  If you did not see him as a toddler, you might now think he has Asperger's.  He has that "little professor" quality to his speech.  However, he didn't talk at all age 4 or so, after 2 years of speech therapy.

But now that he has achieved speech, and is overcoming some of his sensory troubles, we are entering the age where school and social skills are becoming problematic.  Still working on many self-help skills. Stimming and some mild OCD is a problem that comes and goes.

I worry about epilpsy too.  My son had a seizure as a toddler, but none since. Everything checked out ok.  But his neurologist is keeping a close watch and says some boys who had seizures as little guys sometimes start to have them again as teenagers.  That has me a bit worried, but he seems really healthy now.

Katherine

Cathy-CA

My 21yo has had an alphabet soup of dx's including PDD-NOS.  As far as seizures, he was dx'd with complex partial absence seizures and was on anti-seizure meds for about five years at one point.  However, my original dx and recurrence occurred after he had graduated from high school and was not causing the same level of stress on me.  To offer some hope on this front for those of you still raising children, he is out on his own, living in another state (which greatly reduces my stress since I only hear from him once a week or so), working and doing reasonably well.

idaho

I have a special needs child.... not autistic but she was born without a cerebelum.  She is 18 --- plus her father is emotionally abusive to me.  I have been convinced since my dx that stress was a HUGE contributing factor in my BC.   My brother died 2 years before my dx and my mother died one year before.... yeah... just a little stress in my life.    Tami

meg970

Sam,

My 17 year old son has Asperger's, but I really, really hate to blame my Stage I breast cancer on the stress of dealing with his developmental diagnosis as well as his complex congenital heart disease (he needed valve surgery the summer before my diagnosis), because then I feel as if I'm blaming him.

 Perhaps this is a group that can appreciate his response when my husband and I told him (then 15) and my then 18 year old son about my cancer.  The 18 year old predictably burst into tears, but my AS son responded, "and what do you want to have for dinner?"  I thought the older one was going to throw him through the window.  After talking with the AS son later to deconstruct his response, he said, "you told me you were going to be OK, and I was thinking about you. . . I asked what you wanted for dinner and didn't say what I wanted."  

My son is now a high school junior, and we need to get serious about college.  I lost it recently when a friend asked how I was dealing with the stress of the "C" word--I didn't know if she was referring to cancer or college!  

Meg

Binney4

Hi, Sam and all,

We have an autistic son who is 29 and still (and always) at home with us. While dealing with autism is certainly stressful -- discouraging, frustrating, saddening -- it's hardly the only situation that makes parenting difficult. A normally functioning child who falls into criminal behavior, develops heart problems, fails to take full advantage of her potential, or simply knows how to push all your buttons, can be equally stressful. A friend of mine once gave me a lovely plaque with a blissful country scene of a few barnyard ducks painted on it, and across the bottom the words, "Motherhood is like being pecked to death by ducks." There are a good many mothers out there, autism or not, who would understand that sentiment.

That said, I'm a happy mom. Autism is a challenge, but a creative one. Once we learn how to adjust our goals, motherhood in such a circumstance is even a proud achievement that we can value in ourselves.

When I sat my kids down to explain to them about my cancer and what the treatment would involve, my son surprised me by leaping to his feet and wrapping his arms around my neck. "Oh, Mom!" he croaked, right into my ear. "I'm so glad it's not me!" Broke the somber mood completely, and we all cracked up. I know that I don't have a single friend or relative who did not think the exact same thing when they heard my news, but not one of them was brave enough to say it out loud.

Our current challenge is training a large-breed pup to grow into its role as our son's service dog, not in the way that service dogs are used for autistic children (since he's an adult and has other needs), but as a resource for him in navigating crowds, sitting still through church and doctors' visits, and taking some of the sting out of emotional meltdowns. Our dog is 6 months old and has an instinct for sensing meltdowns and a matter-of-fact approach to managing them: paws up on our son's shoulders, lick him in complete sympathy, and nuzzle his neck. Then climb into his lap (we're talking a pup who's already well over 50 pounds of warm wiggles) and steady him until he's over it. No emotional reaction on the dog's part, of course, no recriminations, no sense whatever of personal disappointment -- it's nurturing at its finest, well beyond the capacity of mere human moms to pull off! The bonus is that the dog is soft and very furry and absorbs both tears and kisses with equanimity.

Am I stressed? Probably. Do I love what's going on here? You betcha! Would I trade it? Not for all the world. We moms of "special" kids are rich women, and riches always bring a certain amount of stress. I'll sure be thinking of each of you as you move forward through treatment, hoping for moments of joy in mothering these difficult treasures,
Binney

samshaye

My son was diagnosed (at 3 years old) with autism in 06, six weeks later i was diagnosed with breast cancer. My son had every imaginable symptom. ( His was regressive)  I really had no time to focus on my cancer at the time because I knew I needed to get well in order to take care of him. Went thru chemo then started researching autism. My neurologist said no cure and they could put him on drugs if he gets too out of control.  I am the ultimate optimist and knew somehow I would get him better.  During this time of me treating him I have dealt with 2 recurrances and now with mets to liver and bones.(12.09)  My story of Zack ended up in the Jenny McCarthy book called Mother Warriors. I now believe Zack will save my life, because if i did not witness his recovery ( he is perfectly fine now in first grade and you would never know he was ever diagnosed with autism) i would not have been doing so much research for myself and realizing that there are so many alternatives to cancer treatments and outcomes.  I feel for anyone dealing with cancer and also a child with special needs. It was the hardest but most rewarding thing I have ever done. Every day when I look at him it just gives me hope for cures, remissions, living "with" cancer for many many years.  In February I am opening an Autism Center  to treat children with Autism Spectrum Disorders.  This new diagnosis has put a little damper on things but nothing I can't handle.  I am just excited to be helping children and families with autism.  It is definitely treatable.

                                   

Isabella4

My niece was diagnosed with a low grade Asbergers. She is almost 14.

She is a lovely open sort of child, but its getting worrying what will happen in another couple of years, and she gets mixed up with boys. She is very child like still, more like a 9 yr old, but with the body of a 16 yr old. She holds her own at school, though cannot spell....I think that texting does not help a slow learner. I often laugh at her comments on Facebook, last week she said she was going to a chines resront for her upcoming birthday. But at least she can use Facebook.

I would be very stressed if she were my DD, having to constantly monitor her. When I do see her, all she will talk about is her dolls, she is bewitched by them. I try and turn the conversation, but she loses interest and wanders off. I worry about the outcome for this neice.

Isabella.

Everlastpink

Dear samshaye,

When I was undergoing radiation, I bought Jenny's book to read in the waiting room and I read about you.  My son is doing well too, in addition to the therapies (OT, ST, ABA) we also used some alternative treatments (GFCF diet, some supplements) that seemed to really help.  I agree with you, I would not change a thing.  My son is the love of my life. It has also the "best of times and worst of times" like you said.  Seeing him progress and learn skills that most people take for granted has been the most wonderful experience of my life.  I am so proud of him. 

Like you, I learned a lot about dealing with the medical system, insurance etc. from taking care of my son's autism.  In fact, I was so surprised at how relatively "easy" (use this term very loosely) it was to get cancer treatment compared to autism treatment. 

With autism, we were told you could try this or that, good luck, we really don't know what works. But we'll prescribe drugs if you want.  Insurance covered very little.  Friends didn't know what to say or do and many left us alone. With my cancer, insurance covered everything, there was a fairly clear protocol, or at least choices presented.  Friends came out of the woodwork to help.  Two very different experiences.

I would never, ever, "blame" cancer on my son.  But I do know that if stress is factor, I have had  a lot of stress in my life in the past 5 years.

Katherine 

yellowfarmhouse

HI.  I just found this topic.  I've been really stressed lately -- our nine year old has reactive attachment disorder/ADD/ADHD/sensory issues and she has really been struggling at school.  Lots of behavior and mood issues and difficulty getting along with others... much stress in our family.  We adopted her 7 years ago.  I don't attribute my dx to this stress really but at the time I had extra stress due to working part time while home schooling and a death in family and not getting much sleep. 

I think that knowing that she depends on me so much actually have given me extra incentive to fight .... I will be thinking of /praying for you and if you get a chance would really appreciate your prayers as well.  I'm volunteering at her school and also trying to work and also work with her on skills at home.  Just get really tired sometimes.  Thanks again for this post...

blessings,

Wendy

DKNK22

I am 31, with stage 4, and my younger son who is 3 was diagnosed with PDDNOS a year and a half ago. In the midst of searching for the right therapies and diets and trying to stay sane between full time work, commute while not neglecting my husband and other son who is 6, I get slapped with a breast cancer diag., only to learn a week later that it's stage 4. Not fun people! I'm also in the midst of foreclosure on my house unless I'm able to sell it in the next couple of months.

My poor husband is going through a bad depression and I'm trying to hold it together for everyone, including my disabled mother who had a serious stroke at age 44. Ok, so some of you may be thinking, this person is SO negative, I logged on for some inspiration! Actually and surprisingly, I'm more positive and matter of fact about all this on a daily basis. Here though, I just needed to put it out there and vent. I don't have time to see a therapist regularly so there you go. I only hope beyond hope that my son grows up being able to communicate and function independently. I would say, ok if I need to have this cancer, fine, just let him not struggle out there. While "normal" is a relative term, yes I want him to at least be normal in terms of being able to learn and communicate. My older son loves my younger so much and realizes something is different about his little brother. I don't want them growing up without me to be around to have their backs. I guess this would be true even if all was well with him.

 As far as stress contributing, yes I believe it does. I've suffered with panic attacks since I was 10 and throughout my life, and for the past several yaers have tried to do it all with very little sleep. Not healthy - don't need a scientific study to tell me that.

I just hope my husband sees that we are lucky to have each other TODAY and that we will all be fine as long as we live for the day. I want him to take better care of his health (he so doesn't). Here's hoping for a better tomorrow.

DKNK22

Samshaye, where is your center? If it's close by maybe we could check it out

rumoret

I was so surprised to see the discussion on Autism here on breastcancer.org! My grandson who was born on January 2007 was diagnosed with Autism during the Fall of 2009. We always new something was not quite right but we waited to see how he developed since he was not talking or responding to his name. He was enrolled in speech therapy at 20 months old and did that until he was diagnosed with Autism. He currently goes to CVAP which does the ABA method of teaching him. He is the love of my life--born just 5 months after my chemo. We are exploring life together and I say that I am so blessed to have him in my life!

I have felt such comfort here on this site dealing with breast cancer and finding this thread is a double blessing for me. I will have to make this a favorite topic of mine and I hope that we can share our experiences with Autism now and then. 

Love,

Terry

irish47

Hi,

We really do discuss everything on this site! my 13 year old son has a chromosomal abnormality and as a result has many autistic tendencies and also epilepsy.

I am not saying that stress caused my cancer but it certainly didn't help.. I don't fall into any of the 'risk categories' for BC and there is no cancer history of any type in my family. And I must say, the first few years of his life were incredibly stressful and almost brought me to breakdown stage.

Getting this result was stressful but I have been blessed in that my cancer is grade 1 and nodes clear. Oh and BTW my little man is the centre of our family and we love him to bits :-)

rumoret

Hi Irish47,

I do think stress does not help our bodies and I did have some prior to my own diagnosis. Also, I was not sleeping a full 8 hours for years prior to my breast cancer diagnosis. 

Having a child diagnosed with Autism does cause stress for my daughter and son inlaw--but for some reason he does not stress me out. His autism symptoms are mild and we just have a special bond together--I love him to the core of my being (must be that grandma thing ). 

 Anyway, I am so glad to find all of you and I really hope to gain knowledge from each of you.

Hugs,

Terry

Merilee

I have a 20 year old son with Down's. He is a complete joy but dealing with some of the systems was definitely stressful.

ango74

Glad this thread popped up or I might have missed it. My 4 yr old son, was dx with PPD-NOS, sensory and ADHD, depends on which doctor we see. He was 2 yr when I was dx. We've done ABA and OT, and it really helped. However, our insurance doesn't cover any of this and it was killing us.  So I just had him tested through the local school system, he will start a program with them with them in a few wks and I am overjoyed. He has been home with me through this whole process and I feel bad for saying it but......he can be soooooooooooooooooo stressfull at times.  My husband doesn't really help the situation any, he doesn't know how to deal with him and so he just yells at him.  Well, one of Ethan's sensory issuses is loud noises so this only makes maters worse.  I have not tried the Gluetin free diet yet.......I'm scared and too lazy. lol. He's such a picky eater and I feel like we are lucky to get in him what we do.  I am curious for those of you that do the GF diet if you really noticed a difference?  We already had him tested and he isn't allergic to gluetin.

Take care,

Angie

robinlbe

My 18 y.o. son (who will be 19 next month) is ADHD and I highly suspect Aspergers.  We homeschooled him through 8th grade, and he went to public school 9-12.  He's in college no (three hours away) and did well the first semester (and stopped taking all of his supplements)...during that semester, I was diagnosed with BC.  He slept for nearly 36 hours straight, getting up only once to eat.  We took a drive up to see him and spend time with him after he was given the news via phone and did the sleeping thing.  He's prone to depression.  Anyway, I am fine now, as I was caught early, and after three surgeries, the BC is gone.  However, this semester, his grades have plumetted (sp??)  - he hasnt' been turning in all of his assignments, and if this keeps up, he will likely lose his National Merit Scholarhip.  He has begun taking his supplements again....I worried about him going away to college, as I realize he is not 'really" his full 18 years of age emotionally....but because he was going where we know so many people, I was hoping he'd be ok.  They also have a counseling service I was hoping he would take advantage of (which he did not).

Anyway., glad to find you all on here...blessings.robin

salmof

Hi there.

 I am really interested in this connection between BC and ASD. My  9 yo son was recently identified as being on the spectrum, although I've had concerns about it since his birth. I have the BRCA2 gene fault and was first diagnosed on my 30th birthday in 1998. 2 years later my son was born and 18 months later, I got my second diagnosis.

My gene fault came through my father, who's mother died at 37 in 1943 of breast cancer and who had a son who I think may have had ASD, although they didn't have a name for it then.  

 I recently read about a link between maternal androgen in the amniotic fluid and ASD children and began to wonder about connections between hormones, thyroid, stress, autism and BC. They seem to be linked, but what causes what? I don't know if stress causes the bio changes or whether the biochanges are intrinsically connected to our nervous system.

This is a very interesting question. Thanks for putting it out there. I loved reading all your responses.

salliexx

salmof

DKNK22, I was amazed by the stress load you were carrying when you posted your reply in January. I feel it! You're obviously a strong person.  Is there somewhere you can go or someone who can give you some time and space for yourself?

Sallie

Cydz

Wow, count me in the club! I have a 23 year old daughter with Aspergers, OCD and Turner Syndrome (a chromsomal disorder)! I am also BRCA 1+. My gene fault was also traced down from my paternal grandmother, who had BC and ovarian cancer. My dad could have easily been on the spectrum as well, he had pancreatic cancer. As far as stress goes, well having a child on the spectrum is pretty stressful, combine that with a gene mutation and well, who knows??

Anonymous

Join me up! 

 My son who will be 19 soon has Asperger's Syndrome. He was a very difficult child. I was his punching bag up until 2 years ago. Many times he would beat me up from a tatrum. Since I was dxed with breast cancer last year he hasn't risen a fist to me. I think its the first time he figured out that he could lose him mom. Many of my friends have commented that the stress from him may have be the contributing factor of me getting cancer. Since I don't have another family member who had cancer, it might be true. Please don't get me wrong, I love my son very much. Through all of this he has helped me become a stronger person and a fighter. This year he graduated high school (cyber school) and I am as proud as can be.

apple

i recently wrote about my brother John.  he was the most difficult child and is now a marvelous (if unusual adult).. i wish all who are in touch with these special people peace and hope.  John is now 53.  In my family of 9 kids, 3 of us have cancer (i am the eldest at 54).. i had a brother who was severly schizophrenic, and a sis sorely challenged by emotional issues. 

Just sharing a bit about my marvelous brother John.... (it's a  mini novel)   

I have this marvelous  handicapped brother.  He has been living with my mom who just died.  She gave him the house (or the money therein) to provide for his future.  He really shouldn't live on his own.. he needs support.  I'd like to have come live with us on our new property which has 2 acres of virgin farm.  He would adore taming and shaping it, being a farmer at heart.  We could build him his own apartment or little cottage.  He is totally independent of emotional needs.  He just doesn't form close relationships or depend on people.  I really want him close to me.  I don't want to dump his care on my husband tho if I don't last a long time but Kim says he'd be fine with that ..... I don't know.

--------  from my John Notes file... 2005

"I spent Saturday with my brother, John.  He was born 16 months after I was.  When my mom was just about to deliver, the nurses pushed his head back in and gave her a drug to slow the contractions.  When he was finally born 10 days later, he arrived blue, with a cord around his neck.  It was determined when he did not learn to talk, that he was brain damaged altho we consider him part of the autistic spectrum.  He needed constant supervision as kid... he would walk off the porch, run away or do something socially unacceptable like take off his clothes, so I was his constant companion.  He could count and build things.   I'd set him up with sand, tinkertoys or blocks.  He would build a building or count the pieces.  He learned to talk around age 5, got into a special education class and revealed a marvelous aptitude for mathematics and memorization.  He literally knew every baseball statistic he ever encountered and could do complex computations... multiplying 6 digit numbers by 4 digit numbers in his head.  He somehow graduated from college and got a job with the post office.  He looks normal and seems to speak normally but he has a Jerry Lewis aura about him that is very unusual.

My mother sold her 5500 sq. ft. home and is moving officially into her small bungalow on Monday along with John.  Saturday I helped my brother pack the things in his room.  He's an odd one - a very obsessive compulsive type.   He saves things just like my mom.. all the prescription bottles he's gone thru, all the toothpaste lids he's owned..  every receipt for every thing he has ever bought - neatly categorized and shoeboxed, spreadsheets and computer printouts itemizing expenditures by category.  I am trying to throw these things out without him knowing.

He is a very Christian man, taking to the heart the teachings of the gospel.    He grows spinach, corn and tomatoes for soup kitchens, mows the lawns of the poor elderly for free, and volunteers at a soup kitchen.  John has probably grossed something like $500,000.00 in his career at the post office,  and perhaps has given $400,000.00 away.  .. it's hard to tell.  In his closet were 10 shoeboxes of thankyou letters.  Many of the letters were from missions in central and South America, Africa and New Guinea..  Hundreds of the  letters were handwritten. 

"Dear John,  Thank you for the 50 dollars.  My wife had not been to the grocery store in 3 weeks.   We've been hurting for a long time and are touched by your generosity."

"Dear John,  Thank you for painting my house  - Your friend Mrs.  Sweeney".  - (big sister Mary really wondering what it looked like").  

Every year John does a thing called the Crop Walk.  3 months before the event, John walks the neighborhoods of Kansas City searching for sponsors to sponsor him per mile.  3 months after the events he walks to their houses and collects the money... every penny accounted for.  The Walk I think, is probably 20 miles.. John walks it twice.  The top donating person under John usually brings in about 100 dollars.. John somehow collects about 7000.00 a year.  Every year they try to schedule a television interview with him.  He says he'll be there but skips out to go collect the money.

He was really angry with me yesterday.. He owns about 500 board games.. They are all the same but he multiplies the components, so that Monopoly for instance, will have doubly populated neighborhoods and a bank of 5 million dollars.  His games are a big problem because they really won't fit into the new house.  He doesn't want to donate them because they are not finished.  I kept breaking the rubber bands he has saved for 20 years to put around the boxes when he moves because they are so old.  "Please Mary - be gentle with the rubber bands.  They are my pride and joy."

I somehow got all his stuff over to the new house.    He just called my up to ask me where the receipts for the spinach seeds were.. He has called me 5 times today about those silly seeds and their receipt."

---------------  last nite i had him come over for dinner.   2010 (July)

I told him that now that he was on his own he'd have to watch his manners.. and he did.  People watch him eat and turn away because he is sooooo very slurpy.  He said he was in trouble with the post office for going slow.  He was going slow because he wasn't sleeping good because he missed mom.  That made me sad.   He seemed suddenly very clear thinking and open minded.  I took a picture of him after dinner.   This is probably one of the best pictures i have of him.  It helps that he had a REAL haircut to match the suit we made him buy.   He usually freezes/cheeses up for the camera, makes a funny face or just looks off into the near distance.  

I am the oldest of 9, John is #2.  All the younger siblings have a different perspective of John.  They found him  kind of embarrassing while they were growing up.. and rightly so.  John is the type who would go up to a mother with young children and ask if she was breastfeeding..  We still have to keep an eye on him.     I have to teach him about getting stains out of his clothes and not touching his shirt while eating.  

John has gone to Mass at least once a day for a long long time.

rumoret

Apple,

What a lovely story......it made my day! My daughter was pregnant with my grandson when I was just diagnosed with breast cancer.....so who knows if the stress attributed to her son being born with autism.

My grandson is pure joy.......he gets taught everyday in my home. The teachers are beautiful people and so patient. He is moving right along at age 3 1/2 years old...getting smarter everyday and the language is really coming along. We have accomplished potty training him this summer which was a goal of ours. I can not say enough about him.....he is so smart....and so cute too!

Grandma just loves her little ones.....and they give me a spark for life!

Hugs,

Terry

LCarter57

Rather than stress, it's due to the dysbiosis where the gut flora are involved. The same is involved in autism also - yeast infections, bloating, digestive problems. I have never heard of any autistic child without any digestive problem. Take plenty of natural home made probitoics to find a long a term cure for these illnesses. Eliminate all the factors that badly affect good bacteria - chlorine, fluoride etc etc...