Janna's post has me thinking...

[busywend]

Janna, do you think it is possible the Lithium that helped Dylan also helped him to learn how to control the rages? In other words, it allowed him to think through his rage instead of rage and that is now a learned reaction? Perhaps he has just learned better reactions than raging.

I never thought of that before, but I suppose it is possible.

 

[DammitJanet]

I have no doubt I am bipolar, and that I have been bipolar all my life. However, I my illness has waxed and waned over the years and shown itself in various forms during that time. Im sure it didnt always show itself in the same exact manner every day of every year for the last 45 years.

One thing that is completely noticeable is that when I am in a stress free environment I am so relaxed you might never know I have bipolar. Not unless you looked very closely...lol.

I also have various other things that play into it.

Now with Cory, he was diagnosed before childrens mental health was looking into much more than ADHD and ODD. They still didnt diagnose young kids with bipolar at least down here. Im still not completely convinced he has it but he has the suicide attempt now so who knows. He does have the personality disorder which I am convinced of and I wish we had done more work with the diagnosis of conduct disorder when he was younger but no one actually labeled him with that early on.

I dont think its all a matter of parenting or pills. I think it takes a combination for some people. Sure my parenting wasnt the greatest with Cory. How could it have been considering my own issues? But at least two of my kids grew up to be fairly decent citizens. I dont know the answers. I dont think there are any cut and dried answers.

 

[BusynMember]

Smallmom, that was not my intent, but it is my opinion. As one who suffers from the debilitating moodswings, I'd rather have a child with Autism Spectrum Disorders (ASD) than have him suffer like I have. THat doesn't mean I'm trying to one-up anybody--it is simply my opinion. My son is much happier a child than I was--maybe it's just the two of us, but he enjoys his life a lot more than I was able to do. I know Aspergers folks who are medication free and happy they're different. Never met anyone in my groups who were glad to have bipolar. But my major point is that neither disorder is a good thing or easy. That' smy last word on this. Sorry if you were offended.

 

[Marguerite]

MWM, I understand what you're saying. And Janna, I didn't get any vibes about, "Oh, what a relief it's autism and not BiPolar (BP)" - what I DID get from you, is "What a relief we've got some clearer answers and maybe have a better chance now of helping him."

Also, in terms of how the child perceives himself - both my boys embrace their autism as something about themselves that they value. I think if they had BiPolar (BP) it would be more difficult for them to do that. Also, correct me if I'm wrong - in BiPolar (BP), it's a lot harder to maintain stability than in autism. My understanding - with autism, if you can control the environment, you can control a lot of the problems; but in BiPolar (BP), it's a matter of understanding the changes within, and these are far less predictable.

Not that I am saying one is better than the other; they ARE different and have different problems. And whichever it is, being more certain of the diagnosis makes it easier to be confident of the treatment.

An advantage of BiPolar (BP) - there IS medication for it. Not with autism, unless you're treating something attached to it (such as ADHD).

We soldier on regardless, but I've always said, it is important to keep an open mind about the diagnosis, because it's always subject to refinement or correction.

Marg

 

[BusynMember]

Meg, you are 100% right. HOWEVER, (you can laugh at me if I'm ignorant about Australia) I'm guessing you have much better help there for disabled adults than we do, although we are REALLY making progress. My son will do well in a group home environment or maybe assisted living, but he will need his environment controlled. That might horrify some parents because we are TOLD to want our kids to be self-supporting, independent adults, but that would be so stressful and probably a failure for Lucas who demands repetition and prodding. BUT...living in an assisted living arrangement, Lucas will be very happy. He's a contented kid with a big heart who goes with the flow. If you ask if he cares about having autism, he shrugs and says, "A little." I don't see any of the anguish I had when I was a kid--I used to look through encyclopedias to find out if I was crazy, why I couldn't sleep or eat, why I thought of hurting myself, why I couldn't break out of the blackness no matter what I tried. The raging was unpredictable and uncontrollable to me, even on medications, until I was in my 30's. Bipolar destabilizes your entire person unless you are fortunate enough to find good medications (then you pray they keep working). Most auties consider their autism a different way of thinking, of perceiving (at least the higher functioning ones that I know). Now there are auties who are also mentally ill, frustrated, and also try to kill themselves. But some don't. My son is a happy autie. I know many happy auties. The throes of bipolar disorder are difficult, your life is difficult, your happiness is a gift that you take when you have it, and you hope it doesn't morph into mania because then you're TOO happy and you may quit your medications, etc. Both disorders involve challenges. There is no doubt about that. However---I'm on medications for life. Forever. Have been since age twenty-three, and not all of them helped me enough to stop my suicidal thinking. My son is medication free and doing fine. My own personal preference, which I don't expect anyone but ME to have, is that I'd much rather be happy living in a group home than not living in one and being unable to get out of bed because I can't stand how I feel. They are apples/oranges diagnoses unless they are co-morbid. Bipolar is a psyschiatric disorder and Autism Spectrum Disorders (ASD) is a neurological misfiring in the brain, but not a mental illness. They really aren't a lot alike, although they can appear similar to doctors who don't know how to look for Autism Spectrum Disorders (ASD). Again, this is NOT saying "My disorder is better than YOUR disorder." I'm not like that. I acknowledge the really true anguish of everyone. And we all have our own perceptions too. These are mine only.

 

[Marguerite]

Janna, you mentioned Jenny McCarthy and I just mentally bleeped over it, I've never heard of her. But RIGHT NOW, on Aussie TV, is an Oprah show featuring Jenny McCarthy promoting her new book. How's that for coincidence?

The show isn't over, it's just in an ad break, half over, but I've seen enough to know where she is coming from.

I think this is a matter of semantics and definitions. She describes her son as "recovered" from autism, but not completely over it because he still has little quirks which are the autism showing through. I don't call this recovery, I call it masking it, or adapting. And I Do agree with her that you CAN improve these kids. No guarantees because there are so many variables, but any effort is worth giving it a shot. But you must avoid the guilt if you do not succeed as much as you feel you should. ANY improvement is a bonus and the child deserves as much credit as anyone working with him.

She also claims gluten-free diet helped Evan - good luck to her. They do stress on this show that it's not going to work for everyone. I agree. It IS worth a try, and even now, Janna, I would suggest you consider it in some form (if you can stand it). It worked best for us when I recruited difficult child 3 in his own treatment - he was very strict about watching labels. But that's us. It didn't make any difference for difficult child 3, but I do know it does for some. At least we know now.

She also blames MMR, in their case - and yet she described autism symptoms in Evan from well before the MMR shot was given.

She also lays A LOT of emphasis on her "Mommy instinct" which I feel is overly romanticised. I know I'm another who tells people here, "trust your gut instinct," but to keep saying, "Something inside me just knew the answer," is a bit over the top. Very unscientific, and being scientific is what I'm all about. Hey, it's me.

So while I can see what gives you the pip about her, there is some merit in what she says, if you look closely and maybe re-define the terms more appropriately. And the things she DID with her son - we did the same things. We didn't have the benefit of expensive and rare therapists, we just worked it out for ourselves. Some things we got right, some things we didn't. The play therapy and video modelling looked really good, we did a lot of that. We also used difficult child 3's hyperlexia to help him develop his language.

And we should never underestimate the child himself, and what he chooses to do - so often, the child is quietly developing his own ways to learn how to cope.

I've been lucky because difficult child 3 is also very bright, which has greatly increased his ability to adapt. But he will always be autistic, even if he can adapt to the point where he seems normal. Beneath the surface there will always be that swan legs, paddling as hard as they can to SEEM to be merely gliding on the water.

And MWM, don't be too pessimistic for Lucas. He's only 14, I remember when difficult child 1 was 14 and I was despairing of him ever being able to cope anywhere. He could JUST manage to catch the train to high school, because his sister was there to help him follow the routine. He was intermittently violent, he was constantly challenging or skipping his medications, I don't know HOW he got through his classes and passed each year but he did. He was needing to be reminded daily to go to the toilet to move his bowels (or at least try), told to wash his hair (or I would do it for him), he never did homework and couldn't keep track of his books, his room was a disaster area which was spilling over into the rest of the house. OK, that is still a problem for us.

Now - he's been on disability since he was 16 but is looking for an apprenticeship (ie career) because he wants to get off the pension and become financially independent. He has learned to manage his money, we have recently taken off the brakes on his bank account (and we're hoping he doesn't totally blow the $20,000 he saved while on the pension). He can organise his own travel AND be prompt. He manages his own phone bill, he's planning to buy a car (with the money we made him save).

Support services in Australia - they're not THAT great. At tertiary level, the support is good. It's fairly ghastly at high school level. However, easy child 2/difficult child 2 was supposed to be on support for college this year, and nothing has happened. We finally saw the counsellor last week to find they couldn't even find her file. The year is almost over and we have a lot of problems now to deal with.
As for living arrangements - I consider assisted living away from home to qualify as 'independence' if that is as much as the person can handle. And it is a goal, not necessarily an expected outcome. We aim for certain outcomes but we don't consider ourselves to have failed if the person simply can't do it. Simply trying to get there is enough, if you've reached as far as you can with them.

Assisted living - I think it's sort-of available, but hard to get. Most people simply live at home with parents or a sibling, or (horrors) alone. A man up the road from us is living alone since both his parents died. His father did everything for him, took him everywhere with him, they would go on fossil safaris around Australia and around the world. His father was a wonderful man, the whole community adored him. His mother was quiet, never left the house and died early one morning. Her son found her. HIs father was suffering from cancer, but never let it stop him. He just took his oxygen bottle on safari as well.
Then his father died. This man is now late middle age, he has had a couple of live-in carers. I'm not sure of the arrangement, we do have a Carers Pension which you can get if you care for someone with a disability, for 40 hours a week or more. It's an income option for people who are struggling in life. The first live-in carer tried to get him to sign over the deeds to the house. Luckily our friend is a lot smarter than he seems and immediately told someone at the church, who tried to make out our friend was lying (which, like most autistics, he just doesn't do). The 'carer' got the boot.
The next carer was old and not well himself, he is now in a nursing home with cancer and dementia.
Meanwhile our friend is now living alone. People drop in to see him, they get him to go to church where he gets a meal. He visits his sister, he can get himself from place to place, he has no dress sense though. His favourite outfit "for best" is a pair of red shorts, hot pink Sloggs (like plastic sandals for gardening) and a pink shirt. If it's winter, he puts on a woollen sweater, usually a blue-grey colour. It often has holes or food stains. We don't mind the food stains - at least we know he is eating. But he's still wearing shorts and sandals, even mid-winter.
He's not had an autism diagnosis, as far as I know his only diagnosis is epilepsy and osteoarthritis in the hip. Frankly, he's too old to have ever had an appropriate autism diagnosis. But too many of his characteristics are typical. His obsession with collecting certain things - he has various outdoor rooms built to house them - and his knowledge of them all, is astounding. You can't hold a conversation with him, unless it is about his topics. He gets on really well with my boys - they understand each other. He is often assumed to be 'retarded' but is actually very smart. Local kids hassle him (until we catch them at it).
He gardens. And is good at it - used to work for the local council as a gardener.
But he lives alone. He is fortunate that his parents put money aside to look after him, and very fortunate that he has such a lovely house. It is simple, but looks over the sea.

I look at him and see difficult child 3 in years to come.

We have aged care - nursing homes or retirement homes. But for young disabled, we have very little. It's a scandal, frankly. Most of our disabled are cared for at home, and the requirements for qualifying for a carer payment or carer allowance are fairly strict. One is means tested. We can't get it for difficult child 3. We do get the other one, but it doesn't even cover medication. It's Carers Week at the moment (I think it may have just finished, actually) and there have been a lot of stories about just how bad it is, and how hard it is to get any sort of government support.

With both my boys, I worry about the depression (especially difficult child 1) and the level of anxiety. Our friend does get depressed, I know, but he copes. He doesn't seem to have too much trouble with anxiety - I think it's part of his adaptation. I remember when he was younger, he was more withdrawn especially when his father was around to talk for him. But I've only known him since he was about 35. He'd be in his sixties now.

Sometimes our kids can amaze us.

Marg

 

[givnmegryhr2]

I will always remember what one psychotherapist told us. The brain is a mass of chemicals that is ever changing. He said that the BiPolar (BP) could get better, although it usually only gets worse,but it COULD get better. With this thinking, I think as the chemicals change and the brain grows, diagnosis's could certainly change so just because the diagnosis has changed doesn't necessarily mean it was wrong before. I know we see different things in difficult child since he was first diagnosis'd. I still think his BiPolar (BP) diagnosis is correct, maybe the adhd, although I didn't previously agree with that, I do moreso now. I think alot stems from the BiPolar (BP). I see more Obsessive Compulsive Disorder (OCD) symptoms at times,but even those have changed. Due to medications? Maybe. Do I regret what we've done. No. We had to try something. We will continue to try. He's off of medications now,but I still believe he needs them. Some have worked, unfortunately they didn't last more than a year. We all do what we think is best for our children. That's all we can do.

 

[BusynMember]

Megs,
You are the sweetest. However, I don't really think it's a failure for Lucas to live with other people. I don't want him to get used to living at home because I'm an older parent and I don't want him to suddenly lose his stability at age forty or fifty. He COULD live with his brother, but what would he do? Probably sit around in his room playing videogames. Remember, son has Pervasive Developmental Disorder (PDD)-not otherwise specified, not Aspergers, and doesn't have the desire for independence that some have. He freaks out at the thought of even getting a driver's license. We thought of trying to teach him to drive, and we probably will, but I am concerned that he'll have too much anxiety to drive safely. He WILL work, but he will need a one step job. He can not multi-task at all, and is happy to contribute, even if things are simple. He works very hard. Now if he suddenly morphs into a "typical" kid, we won't have to consider these options, but right now I feel it would be cruel to try to force him to organize, remember, and live on his own. We DO have good services where I live and right near the house--easy access to visits. He's certainly not so disabled he can't walk to the store himself. But he would NEVER socialize if left on his own and wouldn't bathe, change his clothes, comb his hair--he'd be that eccentric person everyone is afraid of who walks down the street looking scary. Right now we are planning "assited living apartment" by age twenty-one with his brother as guardian after we're no longer here. He'll be perfectly happy living that way. Lucas himself will NOT see that as a failure. He doesn't live in "typical" social norms. He is very happy in Special Education, with his friends there, being signed up for Special Olympics etc. In spite of being good natured, he lets you know when he's dissatisfied...lol. He's not above a kick at the floor or a scowl or a grumbled, "I'M NOT DOING THAT!" His naivity about life is not improving. He would happily give all his money or his coat to a stranger. Again, though, he's a happy person, and I don't see not being 100% independent as a failure as long as he doesn't see it that way. School is working with us now to plan for his adulthood. Everyone pretty much sees him the same way because with him what you see is what you get. There are no secrets. He doesn't put on masks. He doesn't manipulative. He tells the boldface truth almost all the time! I'd hate for him to have him anxiously struggle through life just because it is seen, in social norms, as a plus to be completely independent. On an autism board I visit, a very intelligent but severely disabled autistic women has posted as much: Independence is overrated and does not a happy person make. Certainly my son will want independence in all areas he can handle, but not in those that make him overly anxious and/or confuse him. Since, on top of bipolar, I had neurological sensitivities myself and could never have lived on my own (I remedied that by getting married quickly), I think I understand. There are some things he can't do. There are some things I can't do. And they make it very hard to live independently. But, again, assisted living is NOT a failure to me...and so far it's not to Lucas. He gets frightened by the idea of ever living alone. My eleven year old talks about living on her own one day. Lucas says, "Who will take care of me if you can't?"
When we adopted Lucas, we told the agency we wanted a child who would be able to live independently as an adult. Now that we have Lucas, we have changed our priorities and "be happy" is our goal for all our kids. I have learned to be elated that my oldest is a brilliant millionaire (even if he turned ultra-religious and rarely sees us because we're heathens...lol), that my biological son is a Regional Sales Manager (in spite of inheriting some of my disorders and a social phobia), and that my once drug addicted daughter is the Manager of a Fannie Mae and with a very nice young man. I consider myself a lucky mom--my kids are doing the best they can, have good hearts, and are, in my opinion, huge successes and the best kids on earth. I have stopped thinking, "Now if I ONLY had a NeuroSurgeon" lol! Whatever makes them happy is what I wish for them!
Meg, you have such good, insightful posts! Love to read them.

 

[ML]

This is a very thought provoking post and I'm so glad someone started it.

I have been unsure as to whether my son was BiPolar (BP) or as for some time. I finally believe it is AS or Pervasive Developmental Disorder (PDD) not otherwise specified. It truly fits him. He gets set off on meltdowns by the slightest provocation but they are short lived. He does talk about wishing he was never born or killing himself but it's done in a way that's meant for affect more than really feeling it. Though in that moment maybe he does. He has no emotional filters. Everything is crisis. Does that make sense? If I give someone a compliment he takes it personally. "Dont' you think I'm smart"? Of coure honey, you're smart too. Some of my friends think he has BiPolar (BP) and think I should medicate. But to borrow a "Jenny", my "mommy's instince" said "no". Though now i have succumbed to an SSRI in hopes that it will help with the anxiety, mind blowing separation, (and to a lesser extent social and Generalized Anxiety Disorder (GAD)) anxiety. After 6 weeks I feel that he is doing a bit better in school (yeah) but the separation part not so much. I have to start therapy soon (cbt most likely). I can't leave the room without being yelled to come back and this is no good.

I think all of these brain disorders are difficult to live with. I sometimes get scared about the future. I'm an old mom too and realize that i won't be around forever. The only thing I have is a modest pension from work that will help support him should something happen to me. The executive functioning skills are poor but with work maybe he could figure out how to survive independently.

The other day he was taking a bath and I usually help him by rubbing some soap under his arms and whiping his face because he "forgets". He point blank asked me "why are you helping me take a bath, I'm 9 now". Now I realize part of the problem is me. I do too much for him that he could learn to do for himself. It's my job to let him even though it's easier to just do it myself. So many ways to be part of the problem here.

Anyway, I'm sort of hijacking this thread so I'll stop here.

Love,

MicheleL

 

[Janna]

Marg,

Jenny McCarthy, on Larry King, said she went to Google, typed in Google + Autism, and up came a link. It read (her quote): "AUTISM IS CURABLE".

She clicked on the link, and changed Evan's diet, and he's cured. He's a normal, healthy 5 year old bouncing bubble of joy now.

Seriously.

Yeah, I saw the Oprah one, but she was also on Larry King, and she's also done a few other articles promoting her book.

The thing that annoys me the most is that she spreads the word "Autism" around, but never makes mention of anything else. Pervasive Developmental Disorder (PDD)-not otherwise specified. Rhetts. Aspergers. The doctor that follows her around saying his son was Autistic too (can't recall his name now, would have to go back and watch it from Larry King) does the same. "He has Autism". Really? WHAT KIND of Autism? Who knows. Just Autism.

Never hear words like spectrum, echolai, obsessions, tantrums. Other thing that are associated with Autism. Her son isn't even in school yet. Talk to me in 2 years.

I just think she's overpromoting her book, and it's sickening. TYPICALLY, Autistic kids are not just "curable". Not even with years of therapy and interventions. You know this, Marg. It's no secret. She just appears, to me, in my opinion, to be pretty ignorant. I think it's great she threw the word Autism around. But, in my eyes, that's about all she's done. So, yeah for her.


Quote from MicheleL:

The other day he was taking a bath and I usually help him by rubbing some soap under his arms and whiping his face because he "forgets". He point blank asked me "why are you helping me take a bath, I'm 9 now". Now I realize part of the problem is me. I do too much for him that he could learn to do for himself. It's my job to let him even though it's easier to just do it myself. So many ways to be part of the problem here.


I love you, Michele LOL! I do the same things. I have been overexhausted making sure Dylan washes right, brushes right, puts on his underwear right LMAO! Ugh, it's exhausting, no matter what the label or diagnosis or whatever you want to call it.

J

 

[Marguerite]

Good point about the need for specifics, Janna. I guess we are fairly slack down here about labels too, we just look at the kid and say, "What help does he need?" and take it from there.

Michele, there's nothing wrong with SSRI in autism, if it helps the anxiety. (And when I say "autism" I actually mean anything on the Pervasive Developmental Disorder (PDD) scale, I'm a broad broad). And difficult child 1 was told "definitely not autism, definitely not Asperger's," first by an experienced psychologist (who worked with autism) when he was 6, and then at 16 by an autism clinic. difficult child 1's pediatrician says Asperger's, so does a highly qualified psychologist (even more experienced than the first one). So there can be dispute. The pediatrician insists easy child 2/difficult child 2 is NOT Aspie, even though she herself feels she is. So we treat easy child 2/difficult child 2 as an Aspie, to all intents and purposes. Her ADHD label entitles her to support anyway and from there, the support is determined by the need rather than diagnosis. Pinning down the label now makes little different to what services she can access.

difficult child 3 watched that program on TV yesterday. he actually called my attention to it. It did open a couple of doors for me to explain to him how we were able to help him. I also pointed out that a lot of his amazing progress is due to his own efforts and his brains. For difficult child 3, the key to getting him in touch with the world and language, was his hyperlexia. It still is the main pathway for him. It works, so we use it.

There are probably a lot of things we should have done that we either didn't know about or didn't have access to. We invented a lot of our own techniques and tricks which worked for us. We always used the principle of " it and see," always following through with more if we found something to work. The labels got us access to services but there really hasn't been much official support; we've done most of it ourselves. There is a lot more I want to get access to, but it's taking time, effort, money and a lot of driving to get to places.

I can thoroughly recommend CBT especially for the anxiety and any other behaviour issues. But you need to follow through at home as well, not just expect it all to happen in the therapy sessions. We put some behaviour modifications in place at home following recommendations; some worked, some didn't. We stayed with what worked and tried to modify or adapt what didn't.

We also made a lot of mistakes with difficult child 1. Looking back, it would have been easy for him to get a Tourette's diagnosis, with all the noises he kept making. It drove us crazy, we kept punishing him and now we know he just couldn't help it.

Within the diagnosis, there is still the child. Each child has their own characteristics, their own personality. It's easy to see the child as completely subsumed by the condition, but that's not right - the child is a package deal. It's too hard to identify where one begins and the other leaves off. So you manage the package. Personality-wise, difficult child 3 is far more like easy child than difficult child 1. I can see personality quirks of husband's father in difficult child 3 and easy child 2/difficult child 2. difficult child 1 looks like my father and is laid-back and subservient like my older brother. easy child is a spitfire, a go-getter, a mix of a number of family members. Then you overlay the autism on top of it all, plus the ADHD - quite a mix.

We do what we can do. And when we tell the world that we've found a cure, I would hope we would check our facts first and not confuse the issue with personal definitions that have little relevance to the medical fraternity. Failing that, we would need to at least define what we mean and make it clear. "I cured autism" really is not as helpful as it sounds, especially when you follow it up by qualifying it as, "Well, I didn't really cure it, he's always going to have some traits, like someone who's been injured and who still has scars." Unless you are inside the child's head, or getting some input on the topic from the child, you really can't make such statements.

In the same way, I feel it is wrong to say that someone has made so much improvement that t hey can "lose the diagnosis" because I feel that is doing a disservice to the person. They are doing well because they are masking the condition, they have adapted well. But to lose the diagnosis is to deny the amazing efforts involved, continuously, in trying to pass as 'normal'. I don't like "cured". It implies a magic wand waved somehow, which is frankly arbitrary and offers no hope. But 'adapted" or "masked" IS a possibility, but it's not entirely dependent on parental efforts. A lot of it depends not only on the parents' efforts but also on the child's, and MOSTLY on capability. difficult child 3 is doing amazingly well. So is difficult child 1. But they are frankly doing the best they can. And so is the boy down the road, who is ten years old and still mostly non-verbal. HE is also a success story, because he has made amazing progress.

Sensationalist stories are intended: first, to sell books (and a concept) and second, to give hope. But I think they often fail in the second aim because of the over-zealous and often evangelistic fervour used in their promotion. Instead of giving hope they make us feel like failures if we don't instantly achieve the same results. If we refuse to mortgage our home and use the money to chase a cure, we are seen as failing our kids. I'd rather balance things off with the surety that we won't at some future stage be living out of our car.

We expect medical science to be as exact and predictable as a chemical reaction. Mix A with B, you get C. But medicine is very inexact. It is also very imperfect. A lot of diagnosis is, frankly, guesswork and estimation. Probabilities. Educated guesses.

So always keep an open mind. And never take anything personally.

Marg

 

[BusynMember]

Janna, her son in my opinion isn't cured. And Autism Spectrum Disorders (ASD) has not been proven curable. Her son is only five years old. She has no idea what lies ahead for him. JMO, but I think proclaiming he is cured at such a young age is dangerous. My son seemed "cured" at five and only when he started obviously acting so much different from his peers around nine and ten could I stop denying that he hadn't "outgrown" the Autism Spectrum Disorders (ASD) tendencies. And I think Jenny McCarthy will unfortunately see the same thing--there are years when our kids seem almost "typical." There are many people proclaiming cures for autism. I do think some espeically Aspies can get high enough functioning to "pass," but it's fatiguing for them and they know it's not the real them. I'm not saying this to be negative. I just get nervous when a famous name goes around proclaiming a cure for autism in a five year old boy. in my opinion she has a long road ahead of her. Even the look in her boy's eyes in my opinion is that Autism Spectrum Disorders (ASD) off-center look. I personally believe she wants this a lot and, because she is famous, people listen to her. But I wouldn't bet the farm on him being cured or that there is a cure. Everyone would be running for the hills if there was a real cure. JMO

 

[Josie]

I have actually read Jenny McCarthy's book but I haven't seen her on TV promoting it.

From reading the book, I got the impression she does not think he is "cured" but is much better. She even says he still has autism. According to the book, she took him to a day treatment center for autistic children. He was accepted there so he must have really had autism. She called around all different places to get information and had the same problems many of us had here figuring out what to do and getting access to services. Although she had money, much of it was done through social services because that is where autism treatment is.

I read the book because of my interest in the girlfriend/CF diet. It really was a very small part of the book. She also did a candida cleanse and supplements for him. Again, that was a small part of the book. She got a lot of her information from the internet. She wrote the book in part to get the word out about alternative treatments that worked for her. She is amazed that there isn't more information given about these treatments because they do work some of the time at least. She does make it clear that some people do the same things she did and more and don't get the same results.

She did talk about obsessions. This part caught my attention because my easy child has Obsessive Compulsive Disorder (OCD). Her son's obsessions appeared over night and she just didn't accept that this was the way he would be forever. Somehow, she found out about the candida cleanse and this cured him, I think. Her son also had seizures and maybe still does. She talked about his tantrums and how parent of autistic children deal with lots of tantrums.

Honestly, from reading the book, I think Jenny McCarthy is a warrior mom doing whatever she needs to do for her son. She happened to get success from alternative methods and wants to share that information with other moms. I have had success with alternative methods and like to tell other people in case they try it and also have success. If I tell 100 people, and 1 person tries it and it works, it is worth it. Jenny McCarthy just has a way of reaching a lot more people. There's no doubt, she also needed to make money and so wrote about this and needs it to sell, but I think she is sincere in what she is saying. From my own experience, when you have success in a method that is not widely known and/or dismissed, you want to share your experience.