Dammit! Autism...

[Bimmerbill]

DD, who is 32 months old, was just dianosed with autism. I feel bad and very worried for her future. Docs said it was moderate to mild (wouldn't commit to a level, probably not possible now), DW is in total denial. Final report is due in 30 days.

Looks like we can get some additional services for more therapy (she does OT and speech now) but not sure what my small rural town has for support. We met with them a few weeks ago and they have a 2 day a week program, half days. The docs recommended 25 hours one-on-one as a minimum. I may need to move to a bigger town/city with a good preschool that can support more services/time.

They say more therapy is better, the earlier the better. They also said they were optimistic about her future, but I feel myself getting pulled down by the sheer scale of the problem.

Does anyone here have pointers, experience, or something to share? What worries me is that some articles I've read said most of the cost is not covered by insurance. That is fine, I make good money and will cut whatever I need to to get her the help she needs.

How do I know its enough? How do I know how much is too much? I'll feel guilty buying a cup of coffee (or saving in my 401k) if I should spend the $ on therapy. $50K a year for 40 hours of therapy? Heck, I make $74K.... There are so many different theories/therapies available.

I do have a plan: Work with the current OT/Speach people and identify additional services. Talk again with the local school system to ID services. Day care may be able to help out too, funds permitted. Add up all of this, see how it works.

Gotta do some reading, check out some support groups.

But, man, felt like I was stabbed in the heart when they said autism.

 

[bbbamI]

I wish I could give you some advice, but I can not. Just wanted to say I am so sorry for your pain. Hopefully one day the pain in your heart will lessen with the good times that will come.

I'll be thinking of you and your family.

 

[DangerMouse]

My nephew has autism and unfortunately my brother and his spouse were not willing to forgo their careers to put my nephew's needs first. As a result they have not had a great outcome.

I am not an expert, but I have read a lot that you need to put a lot of effort in during the early years before they are 5. Have you read the book by Jenny McCarthy as I believe that is meant to be quite good. She claims to have saved her son from autism by throwing all her efforts and resources towards various therapies.

The main thing is never give up and make sure you and your wife stay strong throughout the fight. Remember nothing you did caused this.

 

[Walt34]

It can be a strain, but you learn to deal with the reality. DW's niece is developmentally challenged (or whatever the correct term is now) and at 13 cannot use a microwave oven because she can't tell the difference between 2:00 and 20:00 on the screen. DW's having so much free time to spend with her niece is one of the reasons she enjoys ER so much.

Her niece really is a sweet kid, although a bit stubborn at times (what 13-year-old isn't?) and was thrilled last summer when we took her to Cacapon State Park, rented a paddle boat and cooked hot dogs on the grill last summer. She talked about that for weeks. Her stepmother is sometimes stressed dealing with everything.

 

[Urchina]

Bimmerbill, I am so sorry. That's a tough one.

I also don't have any firsthand advice, but you might want to take a look by the Mothering magazine's website, Mothering.com. There's a lot of information on autism and treatment there. The majority of it seems to be regarding the purported link between vaccines and autism (so far not supported by mainstream research) but there's also some information on possible homeopathic/naturopathic/dietary work that might help.

Here's the link.

Mothering Magazine - The Magazine of Natural Family Living

Search at the top under "autism"

Here's an article that might be a starting point:

Mothering Magazine Article: Promising Approaches To Autism



Good luck! There is hope, but I suspect it won't be an easy road.

 

[Urchina]

The main thing is never give up and make sure you and your wife stay strong throughout the fight. Remember nothing you did caused this.

Bimmerbill, this is great advice.

 

[FinanceDude]

DD, who is 32 months old, was just dianosed with autism. I feel bad and very worried for her future. Docs said it was moderate to mild (wouldn't commit to a level, probably not possible now), DW is in total denial. Final report is due in 30 days.

Looks like we can get some additional services for more therapy (she does OT and speech now) but not sure what my small rural town has for support. We met with them a few weeks ago and they have a 2 day a week program, half days. The docs recommended 25 hours one-on-one as a minimum. I may need to move to a bigger town/city with a good preschool that can support more services/time.

They say more therapy is better, the earlier the better. They also said they were optimistic about her future, but I feel myself getting pulled down by the sheer scale of the problem.

Does anyone here have pointers, experience, or something to share? What worries me is that some articles I've read said most of the cost is not covered by insurance. That is fine, I make good money and will cut whatever I need to to get her the help she needs.

How do I know its enough? How do I know how much is too much? I'll feel guilty buying a cup of coffee (or saving in my 401k) if I should spend the $ on therapy. $50K a year for 40 hours of therapy? Heck, I make $74K.... There are so many different theories/therapies available.

I do have a plan: Work with the current OT/Speach people and identify additional services. Talk again with the local school system to ID services. Day care may be able to help out too, funds permitted. Add up all of this, see how it works.

Gotta do some reading, check out some support groups.

But, man, felt like I was stabbed in the heart when they said autism.

I believe there is a national autism society or something. You might do some reading on WebMD. Autism is easier to work with than Downs Syndrome, which my aunt has........

 

[Bimmerbill]

Thanks, I won't give up. She is a very sweet kid and very happy. I was really suprised by the diagnosis since she does a lot of stuff that I thought would preclude autism. But there are lots of issues that bothered me, so I brought her in for a clinical test.

There are so many theories and info. Tough part will be sorting it out and finding out what works.

 

[bdk]

Bimmerbill, I am sorry to hear the news. I am not sure where you are located, but Chapel Hill, NC is one of the places that are highly rated for their numerous resources for autistic children. The link below will show you a few more:
tinyurl.com/6s626t

 

[tangomonster]

Hi Bimberbill,

Before I retired, I was an occupational therapist. I worked for years with young children with severe autism. Some had additional problems like mental retardation. Then I worked with teens and young adults in vocational rehabilitation. Most of them were high functioning enough (some were diagnosed with Asperger's syndrome, which is on the autism spectrum) that they were able to go on to post-secondary school and employment. So it's definitely not completely hopeless!

Check out Temple Grandin:

Dr. Temple Grandin

She has a PhD in animal science, although she didn't talk until she was 3 1/2 years old! She is now a professor and one of the leading livestock equipment designers in the world. She's written a number of books about autism.

Check out all the articles about all the young people with autism who go to college:

autism college - Google Search

Marshall University even has a special program for students with autism/Asperger's.

But do beware of people who promise bogus cures for autism, like chelation therapy, aversion therapy, cranial sacral therapy, some special diets, etc.:

Immunizations: Misconception #11

Autism Diva: Murder by chelation

How to Choose the Wrong Treatment for Your Child with Autism - Treatments for Autism

Herbert, Sharp, & Gaudiano - Autism

Hunting for an Asperger's Cure: Food Sensitivity and Unproven Asperger’s Treatments

Some treatments for autism, like OT and Applied Behavioral Analysis:

Autism Speaks, What To Do About It, Treatments for Autism

This is an upbeat blog written by a parent of an autistic child who cautions against getting into debt for fake cures:

Stop. Think. Autism.: Autism Everyday: Exploitations & Misconceptions (Part II)

A nice article from a father of a child with autism:

Susan Senator: Susan's Blog: When Autism Hits Home

Parents as autism's "hidden victims":

Are Parents "Autism's Hidden Victims?"

Hope this helps! Feel free to PM me....

 

[Nords]

I know she's way too young for you to think about it now, but when she's four or five years old you might consider martial arts. Few instructors will take kids younger than that age, but our dojang trains several kids with Asperger's & mild autism. It does great things for everyone's coordination & focus. It's also an easy activity to do solo, one-on-one, or with a crowd all in the same facility at the same time. The instructor can usually adapt the lesson to the kid's mood of the moment.

I think local advocacy/support groups are the best way to break down the institutional barriers and to stay an educated parent. I wonder if there's any factual evidence behind the rumored link between high-tech areas and higher rates of Asperger's/autism. Those areas may just have higher populations that are able to accomodate a better level of support & schools.

 

[Martha]

There is some evidence that people with autism spectrum disorders have more scientists and other tech types in their family than average. Sorry, don't have a link and going from memory.

Less than three years old is very young for a diagnosis. Maybe "they" are getting better at it. My brother didn't get diagnosed (with Autism) until his teens. A sister didn't get diagnosed (with Asperger's) until she was transfered to a special school. One of my sister's nephews is 13 and there is a dispute as to whether or not he is autistic. To me, he is clearly autistic, with the developmental delays, the stereotypical behaviors, the obsession with Thomas the Train Engine, the difficulty in reading the body language of others, and I could rattle off more.

If the diagnosis holds up it will still be quite a while before you will know your child's strengths and weaknesses. One strength of many is the amazing ability to concentrate and tune out the outside world. Unfortunately, that can also be a weakness.

Nords, the martial arts is interesting. I can't quite visualize it. I imagine my family getting our collective asses kicked. We are extraordinarily clumsy. I still can't catch something thrown to me. But starting very young may make a big difference.

Good luck. Temple Grandin, who Tango mentioned, is one of my heroes!

 

[Bimmerbill]

Thanks again. I do not think its completely hopeless. She has made some great progress the past 6 months, and is talking a lot more now. She does have a big vocabulary, but not much spontaneous talking. If I point to stuff and ask her what it is, she can name a lot of stuff. Knows how to count to 20, knows the ABCs, etc.

Our OT mentioned Temple Grandin too.

Nords, the OT mentioned getting her involved in swimming lessons, horseback riding or gymnastics. Stuff to get her involved.

I'm located in NH, so close to Boston MA and other areas with high quality medical establishments.

We are hoping they are wrong, but I guess they are very conservative in their diagnosis and have a lot of experience doing what they did. Our PT has two kids with autism, so I'll be talking a lot with her. DD is done with PT, making great progress and overcoming "low tone."

All the links and theories about immunization worry me. Tho, she has always been delayed. Late sitter, crawler, walker, talker. They did say she was low tone, so spent most of her time mastering the physical part of things. I figured she would turn to the vocal/physical side and she seems to be making great progress.

 

[Nords]

Nords, the martial arts is interesting. I can't quite visualize it. I imagine my family getting our collective asses kicked. We are extraordinarily clumsy. I still can't catch something thrown to me. But starting very young may make a big difference.

Starting early always makes a huge difference, but doing anything with a martial art makes a difference at any age. I'm much more coordinated, with faster reflexes, and better proprioception. Huge flexibility. I know more about joints, healthy stretching, and core exercises than I ever learned on active duty. My instructor says that the parents tell him their kids are calmer, more focused on tasks, and less restless. They can also calm down by practicing forms or punching a bag, which works better than their previous methods of stress relief.

Many families report that their martial-arts kids fight less often with each other. I'm not sure why. When tempers heat up and the kicks start flying, they might get distracted by the techniques. Or they realize that their sibling can now do some serious damage. Or they might remember that their sabumnim told them not to fight out side the dojang.

There are other benefits. I've been exercising my butt off for next year's black-belt test and I'm getting pretty tired of doing pushups. Last night one of the kids misbehaved in the dojang kid's class and was told to do pushups, and I was asked to supervise him while the rest of the class moved on. I got down next to him in the pushup position and told him that we'd be doing them together, even though I was nearly five times his age. Then I asked him how many pushups he was supposed to do, and he replied "50". So we did 50 pushups.

I found out later that the 10-year-old smartass had only been assigned 25 pushups. Maybe he was inspired by my comment about being 5x older. I'm not sure which of us learned more from this experience.

Nords, the OT mentioned getting her involved in swimming lessons, horseback riding or gymnastics. Stuff to get her involved.

Excellent. I've read about swimming & gymnastics and I've seen a couple autistic kids taking riding lessons here. The riding can be hard mental work and physically exhausting but it also helps take care of a kid's urges to have a pet. As long it's a really really old, calm horse...

 

[Urchina]

Bimmerbill,

There's an adaptive riding program out here that offers horseback riding lessons to kids who qualify. They're certified by the North American Riding for the Handicapped Association (NARHA), who certifies instructors for adaptive riding, safety, etc. I've visited the facility and it seems like a fantastic program.

Their website is: North American Riding for the Handicapped Assoc., Inc

I did a search for centers in New Hampshire and came up with this link:

Center State Search

As far as martial arts goes, our local Y does "itty bitty kung fu" for kids as young as 3.5, so you might check your local YMCA or other athletic club.

As far as high-tech areas having more folks with Autism spectrum disorders, I've read that, too. Apparently the prevalence of autism in San Jose, CA is among the highest in the nation. A possible explanation is that science, engineering and computer programming are very forgiving of those without highly developed social / interpersonal skills, and the ability to focus intensely is very helpful in those fields. So anywhere you have a high concentration of technical / information - focused jobs, you may have a higher concentration of people who have ASD.

 

[OAG]

DD, who is 32 months old, was just dianosed with autism. I feel bad and very worried for her future. Docs said it was moderate to mild (wouldn't commit to a level, probably not possible now), DW is in total denial. Final report is due in 30 days.

Looks like we can get some additional services for more therapy (she does OT and speech now) but not sure what my small rural town has for support. We met with them a few weeks ago and they have a 2 day a week program, half days. The docs recommended 25 hours one-on-one as a minimum. I may need to move to a bigger town/city with a good preschool that can support more services/time.

They say more therapy is better, the earlier the better. They also said they were optimistic about her future, but I feel myself getting pulled down by the sheer scale of the problem.

Does anyone here have pointers, experience, or something to share? What worries me is that some articles I've read said most of the cost is not covered by insurance. That is fine, I make good money and will cut whatever I need to to get her the help she needs.

How do I know its enough? How do I know how much is too much? I'll feel guilty buying a cup of coffee (or saving in my 401k) if I should spend the $ on therapy. $50K a year for 40 hours of therapy? Heck, I make $74K.... There are so many different theories/therapies available.

I do have a plan: Work with the current OT/Speach people and identify additional services. Talk again with the local school system to ID services. Day care may be able to help out too, funds permitted. Add up all of this, see how it works.

Gotta do some reading, check out some support groups.

But, man, felt like I was stabbed in the heart when they said autism.

I could not tell where you are residing however, this may interest you if you are living in VA: Parents press for autism insurance coverage - CNN.com

 

[Notmuchlonger]

I don't have any sage advice. However, best wishes to you and your family in dealing with Autism.

 

[brewer12345]

Bimmer, sorry to hear it. Don't have any sage advice, but I do know that people with autistic kids have been known to move to NJ due to the wide array of services/therapies available. If you decide to do so, please PM me as I would be more than happy to offer whatever help I could in poking around NJ.

But by all means do research and avail yourself of the autism organizations out there.

 

[Bimmerbill]

Thanks. I'm not exactly tied to my career, but do enjoy the federal benefit system. I'll certainly need a job with a family oriented balance, and the fed job seems to fit the bill. Health care open season is around the corner, so I need to shop for best coverage I guess.

 

[quietman]

I have a friend whose older child was diagnosed with autism. She spent many years fighting regular public schools for support, engaging in direct therapy of various kinds, advocating for her son to make sure what was done was as much as possible for his benefit and not whatever was convenient for schools. Outcome was pretty favorable as he's now a successful college student, has some pretty good skills as a stand up comic and a good circle of friends. He'll never be "normal" in that sense, but he's doing well by anyone's standards, autism or no.

She believes that person-to-person interaction as young as possible was important in her son's development. Talking to him, asking him questions, staying engaged as much as possible. He was strongly inclined to go off and be quiet by himself, so she had to work sometimes to keep him interacting with people - but she's convinced that made the difference and helped achieve such a favorable outcome. It's only her personal theory, so your experience may be different.

 

[Bimmerbill]

Quietman, thanks. My daughter tends to go off by herself too. That is part of the reason I enrolled her in daycare. As an only child she was just too isolated.

The 25 hours of therapy they recommended is engagement therapy/opportunities. I've been really stepping up my engagement. Its hard for me, as a natural introvert and nerd.

 

[samclem]

Bimmerbill,
There's a lot to be hopeful about in your post. You've identified the situation early, that will almost certainly lead to a better outcome. On a national level, autism is finally being recognized for the national challenge it is.

I had a co-worker whose son has Asperger's. He graduated from a demanding college program last year and is now workign full time. You are on a challenging road--but with great challenge comes great reward. You're thinking about the technical/logistics side of things now (identifying a treatment regimen, paying for it, possibly moving, etc) and I'd be doing the same thing. But, in your heart I'm sure you know that there's nothing that is more important than your love for your daughter, your patience, and the strength of your marriage and your family as you guys take this on. Best of luck.

 

[free4now]

One of the things I've been doing with my early retirement is exploring whether I have some mild Asperger syndrome. After researching autism and asperger syndrome it's clear that it's not a "have it or don't" situation like cancer. The range of expression goes all the way from completely unaffected to extremely affected. Whether you "have" it or not depends on where you draw the line. I think it's pretty clear that Bill Gates has Asperger Syndrome.

I've now interacted with about 50 adults who identify as having Asperger Syndrome (AS), most diagnosed by professionals, and the range is absolutely astounding. Many are folks where you would never know they had AS unless they said so, and then there are people who are unable to speak coherent sentences. Because AS was only popularized and added to the DSM-IV in 1994, most adults with AS grew up without knowing there were others with the same condition.

I do think that my adaptive autism spectrum characteristics (tendency to systematize, singleminded focus on things I'm interested in, often feeling more comfortable interacting with machines than humans, approaching things rationally rather than emotionally) are a big part of what got me into computer software and allowed me to early retire. So it's not a death knell by any means.

I do credit my mother with having done a great job raising me; as I read about what to do with aspergers kids it's clear that she intuitively did things right. It's basically a matter of meeting the kid on their level, being involved enough to keep the kid as engaged and challenged as they are ready for. So I do believe that early intervention is important. But there are an awful lot of quackish and just plain weird ideas about how to deal with kids on the autism spectrum. They give parents hope but may in the end cause damage. So be careful and use common sense in deciding what inteventions to apply.

If you are interested in Asperger Syndrome, the best book I've found is Tony Atwood's "Complete guide to Asperger Syndrome". It covers all ages from childhood to adulthood so it gives a good idea of what to expect, and what to do about it at various life stages, from a viewpoint that is both scientific and humanistic.

 

[Martha]

Its hard for me, as a natural introvert and nerd.

But this will help you understand and relate.

 

[mews]

Good luck on your journey! My nephew was diagnosed as Asperger's and was able to finish high school and college. No, he's not 'normal' in the average sense, but autism is a wide spectrum.

There was an interesting article in the New York Times (Sunday?) on a school based on an 'engagement philosophy' for boys with autism spectrum disorders.

From what I know, from the outside, not as an expert, there is a lot that can be done while the young brain is wiring itself. Every therapy I have heard of is intensive - lots of time targeting specific goals and working on them in all different ways.

The theory seems to be to re-wire what can be re-wired, to compensate for the initial glitch.

Yes, my brother (my nephew's father) has spoken of seeing parts of the spectrum in himself. I'm no social butterfly myself, and can obsess very well when something interests me. That's why I have a Master's degree and trained for 20 years and earned a fifth degree black belt.

So, if you can get your daughter down to the 'focused nerd' side of the spectrum, that's a pretty good place to be, IMHO.

Good luck, and use support groups for yourself and DW too!

ta,
mews