Autism,When is enough , enough?

Question

I have my son in just about every therapy i can think of and doing extra things too. he is in discreet trials , occupational therapy, speech therapy, sees a pediatrician often and takes medicine. now when do you add the gfcf diet or the supplements? should I check into chelation or is it just what life deals us? I am really thinking some of this is chasing rainbows. Nothing seems to be the cure for autism yet everyone has an opinion but nothing substantial, I am a mother with a severly autistic 6 year old. What have you seen proven that will work? Is it the cure? Did it change someones life and is it strong enough put hope in a broken heart? I will never give up and I am strong but I am also tired of maybes I wanna know who saw what, that really helped a child with Autism. Are you not tired of ideas but nothing real? I know I am.

Answer 1

I am sorry that you are going through this. I know that your son is not what you thought that he would be. Focus on his strengths and love them! Accept that he is who he was created to be. I worked at a Lovaas replication sight for 4 years. I then worked as a case manager for individuals with autism. There is no such thing as a cure. There are significant gains that are made. Strive to give your son the best life that is possible for him. Having a completely burned out, frustrated mother will not be in his best interest, Do you know how when you are on an airplane, they tell you that in case of loss of cabin pressure, to be sure to put your own mask on before helping others? There is something to be said for that in the world of disabilities, too. Take care of yourself, or you will be no good to your family. Re-evaluate what you are doing. What is working? I had some kids on the GFCG diet who very much responded to the lack of casein and gluten. Others...well...I know that mom and dad WANTED to see a change, but it clearly made no difference. If it's not working, don't do it. Research chelation. I have honestly never seen anyone make any significant gains from it, but that doesn't mean that no one does. Hang in there. I don't know how you feel because I don't have kids, but I have the utmost respect for parents of children with autism. Hugs. (Or would you prefer to purchase a weighted vest and just wear that in leau of the hug? LOL),

Oh...as a side note. I have a friend with asperger's. He told me that he sees the world like this:
There are trains and there are cars. I am a car. I change my mind and go a different direction than I originally planned. I drive on asphalt. I can travel alone or share the road. I move quickly, but not as fast as a train. He is a train. When he begins to move, he goes much faster than a car, but he cannot change directions suddenly. He can't take alternate routes. He doesn't like to share the tracks with other trains. The problem occurs when the cars make the trains share their asphault. The trains tear up the roads and contually crash. They get stuck, and the cars get angry. But....who ever said that they would make good trains? Why can't we just give him tracks to ride on?

It's a valid point.

Answer 2

Autism is a spectrum disorder, like... a rainbow is the spectrum of light.

Some things will work for some kids, and some won't, which leads to the currently tossed about idea of reclassifying differences... but that's another issue.

While there isn't a cure, there are different things that work for different people. Some people show substancial changes while on the no wheat/gluten/dairy diets, while others don't change at all. Some respond to hyperbaric oxygenation, while other's don't.

I believe there's a reason why the icon for autism is a puzzle peice. One of the biggest issues people that know autistics wonder is how aids research scores hundereds of times more $$ while autism affects hunderds more people... It's probably because one leads closer to death...

The hope I can give you is that there's a "mental awakening" that you can expect in a few years, where a lot of people make some of the changes that can allow them to function in the "real" world.

There's a recent documentary "Autism is a world" that was written by an autistic person that's great.

I'd also search out a support group, and do personal research. It's a challenge to step up to...

Answer 3

Autism sucks sometimes, for those who have it, and for those who are dealing with it on the other side. It sucks that they can't point to one thing and say, 'this is what caused it'. It sucks that they can't provide a miracle pill and say 'this is what will fix it'. The fact is that it is a spectrum disorder. There are many types of autism, some caused by environmental factors, some by genetic, and some by mechanical accident. There are genetic diseases that cause autistic syndromes. There are genetic predispositions that lead to autism. There are environmental factors (such as lead or mercury poisoning, google acrodynia) Some people who have had severe head trauma (damage to the frontal and parietal lobes) also show autistic traits. Some children don't have autism, but gut disorders which manifest as autistic traits (your gfcf cures) Most of the time docs throw their hands up and admit, we don't know!

I would say you're doing too much if you are losing your family to autism. If your whole world revolves around 'fixing' your child, rather than helping them. Does that make sense? I have a daughter with moderate to severe autism (depending on the day) and a son that is higher functioning.

We also did everything we could think of, and in the end, the stress of all of it made my daughter's autism worse. We did the gfcf diet. it did not help our daughter in the slightest. We tried supplements, they did not help. I know you're scared for him, but is there anyway you could cut back on some of it, and reintroduce it slowly? Behavioral interventions (such as your DTT, and ABA, floortime etc) are the only proven methods of autism treatment.

The trouble with those things is that it takes so very long. It is hard and painful, when all you want is normal. But it does work. My daughter, at six, was peeling the skin off of her feet and hands and eating it. She still played in her own feces. She rocked and didn't talk. We pulled her out of all her therapy, and actually pulled her out of school. We created a very intense home therapy for her, not one that excluded family, but included everyone. Within a year, all of that was gone. She's not neurotypical, but she's happy, relaxed, she speaks in five word sentences. She's still inappropriate sometimes, echolalia repeats her favorites like 'poop', she rocks a lot, she doesn't just choose to chat, but we can live with this.

If the therapy isn't helping at all, if he's honestly not learning anything or getting any functional behavior out of it, it's time to find another therapist. It shouldn't take longer than a few months to establish a relationship and make some sort of improvment. EVERY child can improve in some way, I've seen it time and over. God bless.
You might consider joining parenting-autism, at yahoo groups. i don't have the link right now, but it's a great online support group.

Answer 4

My child was severely autistic. I have another that was high functioning. Nothing helped much until we did the gfcf diet. Now almost 5 years later my older one is virtually cured (completely indistinguishable from peers) and my younger so much better! The younger is on grade level, has lots of friends, and for the most part blends in with his peers. We still see regression each time they get gluten, but it clears up after a few weeks.

The diet may seem like a lot of trouble, but it is worth a try. It is an intervention that can't hurt him unlike some of the others. My kids eat chicken, potato, rice, and lots of veggies. They don't feel like they are missing anything. There are substitutes for everything! You need to try it for at least 3 months, preferable 6. I found a great website that has a way to start the diet gradually.

Good luck!

Answer 5

Hi! I am a parent and advocate for Autistic persons and have seen a lot of rainbow chasing lately. The areas of diet and supplements, to me, give a lot of false hope to many parents. Also this is a lot of increased workload for the parent who is usually experiencing one crisis or another just getting through the day with an Autistic child. Don't beat yourself up for not trying every available "cure." You and I both know that this is a brain disorder and some digestive enzymes will not cure Autism. Like Schizophrenia, there may not be a cure, but there are medications that can assist the person. A Psychiatrist will be a key person as your son hits the turbulent times of puberty, adolescence, etc. I don't waste our precious time advocating for a cure. I use my time finding effective professionals, therapies, medications, social connections, etc. Learning to live with the Autism both as a person and a family member or caretaker is a lifetime process. Best of luck to you and your little son.
Please feel free to email if you need to.

Answer 6

Hi! I'm 26 years old, and my younger sister (24 yrs old) is autistic. Depending on which doctor you talk to, she's considered moderate to severe. My parents didn't have all the resources (or the help of the media) when my sister and i were growing up, so they relied on doctors and schooling. Luckily, we lived in a state that offers a lot of support for developmentally disabled children, and my sister was enrolled in the first autistic-only school in NJ during the first year of enrollment. She stayed there until she graduated at 21, and now she's in a workshop program.

I can honestly say the best results we saw were from an engaging school/day program that builds social skills, combined with the right medication for behavior control. I know many people don't want to medicate their children, which I can understand, but once we found the right medicine for her while under close supervision of her psychiatrist and pediatrician, her behavior improved tremendously

I know what it's like--everything you're going through. Some days we thought it couldn't possibly get any worse. But, there's always tomorrow. And there are so many more resources, schools, specialists, and support groups than there were twenty years ago, it leaves me very hopeful for the future.

Answer 7

I don't have an autistic child, but I've dealt with a few autistic children through my job as a home health nurse. Every parent I dealt with thought the gfcf diet made a difference in their child. I'm not saying it made them highly functional, but it seemed to cut down on some of the more dramatic hyperactivity type symptoms, which made their lives a bit more manageable.

I have heard through them that the chelation did not help these kids, and we were giving injections of an experimental drug (Secretin) to one child but it did nothing to modify or improve her behaviour.

I think you are very, very wise to question all the maybes. It's good to be hopeful, but it's better to be realistic when it comes to autism. From what I've witnessed, it can be an exhausting situation with kids who are severly autistic. Hopefully your pediatrician is aware that you are willing to do what you can, but that you don't feel the compulsion to try every single remotely possible suggestion out there. I admire you for your dedication. It's not easy, no matter how much you love your child.
Good luck to you and your family.

Answer 8

Autism is such a frustrating disorder, because it affects every child differently, and therefore what works for one doesn't always work for another. I don't think there is anything that is 'proven', because that requires extensive testing. I know that for my son, we aren't going the medical route. I am doing my own therapy, at home, and have seem tremendous results with some supplements from a welness company that I am partnered with. But, that doesn't mean my way will work for all kids, it's what I found to work with mine, one that I babysit is improving with this regimine as well but not as quickly as my son did, and I am helping others as well. But they all progress at different paces. You just have to keep fighting, and when you see that something isn't working after a few months or making things worse, then stop. I don't see any harm in trying different things. I know several people that the gfcf diet has done wonders for their kids, others have not been affected by it. But for the ones it is working for, hooray for them! Had their parents not tried it, they would be having more problems than they are now! I haven't tried it, mostly because my son is progressing without it, and I am for as little intervention as possible, as long as he's progressing. Your son is more severely affected than mine, so I can understand your frustration. I've had it really easy with mine, and I'm sure I would be in the same boat if he was more severe. Even before we started doing anything, he was bad, but he was still in the high-functioning range. I would say, if it's not going to hurt him go ahead and try, but DON'T get your hopes up. If it works it works, if not, you haven't invested your heart in it. But make sure you're only adding one new thing at a time, so you know what is working. Feel free to contact me if you'd like, for support.

Answer 9

I am considered to be mildly autistic although I developed the ability to speak at the normal age, so my take may be a little different than someone who is considered profoundly autistic.

First of all, chelation therapy is NOT a suitable therapy for autism. It is DANGEROUS. Chelation therapy should only be used when a patient is suffering from actual heavy metal poisoning, and that's not what autism is. Most of these treatments you've been looking into (diet changes, supplements) are not scientifically proven as effective treatments for autism.

Some apparently profoundly autistic children can grow up to develop language skills and are often quite intelligent behind their silence and sensory overload. You should help your autistic child develop the skills he is probably best at: visual memory, high spatial reasoning (like a mechanical or civil engineer), recall for details and facts, etc.

Answer 10

It sounds like you have been chasing rainbows for a while. I am not passing judgement because I am a parent of a profoundly autistic 6 y/o as well. I've been where you're at and it sucks because you are still grieving for a child that will never be. It is not easy but your energy is better spent making your childs life the best it can be and loving your child for who he is not who you wish he was. I am not intending this to be harsh, in fact I needed things explained to me this way, too.
Every child is different and most all autistics need help with lots of things. But we do not look at our child as being broken or incomplete (puzzle reference), we learn what he needs and accomodate his environment so that he is best supported and you know what, it works. We were angry, frustrated and desperate when he was younger. This is a dangerous time because you are most vulnerable. The quacks and vultures will try to sieze on your desperation by promising miracle cures and the like. We came to the realization that our energy was better spent advocating for him-not buying into the idea that he was lost in some abyss and needing some "cure".
There is a lot of dangerous information out there. You had mentioned chelation. I know there are some parents out there who swear by it but I would strongly suggest you research it end to end before jumping into something that has almost no scientific data to back up it's claims. Kids have died using this therapy-that should tell you something. Our child has shown great improvements in many areas since we quit trying to fight who he is and let him become the child he was developing into-and all without chelation or some other quack therapy.
It's a scary world and sad thing is, there is a lot of prejudice against autistics because people don't want to understand how they're wired. People are scared of them. They're often bullied and taken advantage of. This is what infuriates me especially and what I consider to be a more urgent matter than pie in the sky treatments. Don't get me wrong, our kids need lots of help and assistance to navigate this world because it is not set up for them-in fact it's downright hostile to them. Speech and OT can help them function better in the world-you just have to find out how YOUR child learns and then BINGO, you've got it.
There is hope but you don't get it from quacks and other parents blinded by their anger.
I would advise you to search the internet and blogosphere for opinions of autistic adults. Most are happy with who they are and are not in favor of many of the treatments out there. To me, their opinion carries more weight than a bunch of angry parents. You'll probably be amazed at the network of people and supports out there comprised entirely of those on the spectrum. They are not "empty shells" of people and many describe themselves as being labeled "low fuctioning" in their younger years.
You need to adopt a "glass is half full" mentality but it will do wonders for your child. Best of Luck.