An Unqualified Mother’s opinion of Autism Treatments

Hi guys, I am just a mum, I have no science experience really, and don’t claim to be an Expert in anything. I am not an Autism Expert, Dietician, I have no medical experience either. This is my advice to others, from what I have researched, in layman’s terms, as I cannot write any other way, I hope this might help some people.

An Autism diagnosis can be scary, especially for a parent. You don’t know where to look. A good pediatrician may be able to explain to you that autism is mainly genetic Autism genetics but there are still questions you may want ask.

A google search will provide you with a huge amount of questions rather than answers. The blame game sets in, was in something you did wrong in pregnancy, is it something wrong you did as a parent, why is this happening, is it my fault? The answer is no, you did nothing. More Googling can get you blaming others, the wrong process during birth, the antibiotics they needed for an infection. The vaccinations? A mixture of denial, sadness and anger can drive you into a whole new set of problems. You fail to reach that essential aspect of the process, and this is the last stage, acceptance.

This is a good list of dangerous Autism treatments scariest autism treatments Please have a good look at these and make sure you are never tempted by them.

Parental Pressure: “There are so many positive results with Autism Treatments. My child needs me to get him the best treatment possible. Its my responsibility to get him as normal as possible, so he doesn’t end up in a “group home” as an adult”? I hear the above quoted a lot, unfortunately it is sad and misinformed, and here is why: Places that advertise “Autism treatments” want your money. Like all others its a business. If they simply said, your kid might take longer than others, but he will get there, and you can never predict he won’t have a full filling independent adult life, would they have a business? Of course not.

“But my son’s prognosis was very grim. His pediatrician told me he will probably never communicate. He will always be severely autistic, these treatments are my only hope for a miracle”. If your doctor told you that, I would ask him the following question back “where have you hidden your time machine”. All kids progress, some faster than others, but they all do. Speech therapy, occupational therapy, early intervention, they can all do wonders. Yes life can be tough. I won’t pretend to understand what it must be like to have a child with classic or severe autism. But progression is always possible. Autistic kids can flourish so much. There is a whole host of Autistic talent on my friend’s website: i don’t need a cure flashblog

“But when I go onto autism treatment sites, I see so much progress. I see developing new skills all the time, parents celebrating achievements and vouching for the product”. Go on to Autism support groups which aren’t treatment based. You will see exactly the same thing, only this time it is the child being praised, not the product. This is from what I have witnessed anyway. “But, there is no mention of ATEC scale numbers going down?” Check out my other blog:

the ATEC scale not a reliable source

What about ” the recovered children”
Since more evidence is proving autism is genetic, the theory of a recovery seems to ask more questions than answer them.

The most obvious to me is that these children were actually misdiagnosed. From stories told by parents, many of them seem to show very similar symptoms, always gut problems, and always extreme behavioral problems, also often OCD type behavior. Do these symptoms always match autism? No. But since pediatricians have to follow a strict worldwide DSM 5 guideline, I guess misdiagnosis will be few and far between. Some conditions do appear to mimic autistic traits, such as PANDAS, Vitamin B12 deficiencies Apraxia, etc, so I guess it could be plausible.

The other theories I have, are both age and coping abilities, and unfortunately repression.

Autism is not a static condition. Sometimes in life traits seem to be a lot more obvious than other times. At a young age, non verbal kids can show lots of traits, these may ease as language develops. Again, the social aspect may return as being different from peers as play turns into conversation. Coping mechanisms change as the child gets older.

Repression, and this is the sad aspect, many kids learn to hide their traits due to parental pressure, they thrive to hide their personality and traits. This can very much cause PTSD in later life, unfortunately.

So let’s have a closer look: What do Autism treatments often claim is the cause, or an issue with Autism?  Well as get I haven’t found one that doesn’t blame  vaccines.

Vaccines – Do vaccinations cause autism? No!  Check link: Are vaccines necessary or dangerous?

But my child appeared to regress after vaccinations?  Here are two links on possible theories for apparent regression:

does regress autism exist – Forbes

mommy phd epigenetics link

But what about vaccine injury court? That must prove the connection? Er no, check this link vaccine injury stories – not what you think

Epigenetics

My very limited knowledge in science holds me back on this one again. Here is a good video explaining it :  Epigenetics video

With regards to epigenetics and genetics, genetics always take priority. Therefore with Autism, the likelihood Autism is genetic is far stronger.

This link Epigentics and Autism explains the connection with Autism and epigenetics. Alison (mommy phd), in the link above manages to explain a possible reason why a child is often seen to regress between the ages of 1 and 2. This regression is often mistakenly blamed on Vaccines

Candida/fungus/yeast

A yeast infection is caused by Candida, which is a type of fungus. Thought I would clarify that, as I get that all mixed up.

Candida overload – This is often associated with Autism

Again, is it true, will it help to try?
first read this link: http://www.sciencebasedmedicine.org/candida-and-fake-illnesses/Basically what it is saying is that candida would only present as an overgrowth if your child was undergoing Chemotherapy, or had a very low immunity such as Advanced Stage Aids.

This is the science based link.

Here another link: http://www.tacanow.org/family-resources/what-is-yeast-overgrowth/. This presents yeast as being present, as it shows specific behavioral issues associated with yeast. Again no real science backing, but a link which seems to connect behavioral issues with yeast?? Hum, are there a lot of autistic traits here?? Not really! Ching ching goes the till. Sorry, will try and remain open minded.

My advice would be, has your child got a very low immunity? If he has, perhaps think about getting him tested if you really want and can afford it. A simple stools test, I guess won’t harm anything but your wallet.

If it comes back positive , get some anti fungal medication with less sugar in the diet? If you really feel it is necessary. A change in diet might help, I guess, but overall I am not convinced by the “candida theory” at all. Some people do swear by it, so I can’t vouch for them. I have a few Science based links here to share, please read them first though, without making any rash decisions scienced based link about GAPS diet. good blog about gcfc diet . a study showing diet change is ineffective

Immunity and inflammation

First read this autism-immunity-inflammation.

Ok, heads up, this is quite confusing. From what Emily writes above the research on this, so far, it is limited at best. The following article she debunks here is someone claims inflammation is a cause of Autism by comparing tests on mice. Not exactly good research for humans. The writer claims that Autism would be brought on by a womb infection in the mother. Again, speculation with little research. However, at least this would stop the speculation of vaccinations being go blame. It isn’t good enough evidence to mean anything

Autism is not an Autoimmune disease,

journal-club-debunks-anti-vaccine-myths

Vitamins, I do get this, our kids often have a very restricted diet, so a Multi vitamin might help. My son, to this day, still takes an omega 3 supplement, and although not scientifically proven does seem to help. Magnesium, pro biotics, extra zinc, other things, hum, again an expensive route that may help with certain aspects of your child’s life, but I would certainly recommend testing done for deficiencies before you even start. A healthy diet if possible would be the best option. Any vitamin supplement which states it will increase speech, development or “cure” autism, in my opinion, is a lie. Vitamin supplements are a huge business, which many critics would say can have an amazing placebo effect

Diet

The Big Diet Debate

About that child who recovered on a GCFC diet? Mom is delighted, she tells the world, writes a book, she is convinced autism is a “gut disease” Well I guess that response to me would be, good for them. I can’t put myself in her life. I have my doubts that her kid was ever autistic, perhaps a serious food allergy was causing her child autistic type traits, or perhaps he has simply got that bit older, and presently doesn’t show enough traits to justify a diagnosis just now? Who knows. But that’s one child, and all kids are different. And certainly doesn’t prove any theory that autism is all connected to the gut, in my opinion.

But people say Autism is a “gut” problem. I have heard many parents complaining of their children screaming in pain due to their ‘Autism’???, This makes no sense to me. “All our kids all have serious stomach problems. It’s called ‘leaky gut'”. Ok , firstly not all kids have stomach problems. I am sorry if your does. Maybe its a false comparison, but for me, its like saying Downs syndrome is a heart problem.
Obviously no one would agree with that statement either. Stomach and immunity problems can come with Autism. Heart problems can come with Downs Syndrome. Stomach problems can be a co morbid condition of autism. If your child appears to have, or complains of constantly having a sore stomach. If his bowels aren’t soft enough and regular enough, of course you need to help him with it. Don’t let the doctor just put it down to being part of “Autism”. I see a lot of parents complaining in Facebook groups of conventional medicine writing off autistic kids, with everything being due to ” Autism”, which is disgraceful and very misinformed. With my limited knowledge of laxatives, modern medicine might not have all the answers. Obviously there can be a huge connection between diet and gut problems. Then change the diet, try GCFC, try GAPS if you have to, it MAY result in less behavioral issues, and sensory issues due to your child not being in pain, but please, please don’t see that as your child’s autism being ‘healed’. That is the completely wrong way to view it. Again, there are a multitude of science papers which dismiss any connection with Autism and diet. See below. The only proved Science based connection to restrict your diet from Gluten etc, is if you have Coliac Disease, or another diagnosed Gluten Intolerance. But I think its always good to keep an open mind.

The MTHFR gene ( no its not made up) mutation seems to be the next topic anti vaxxers have grasped upon, stating, that if you have this gene and get vaccinated you can get develop Autism. But despite its horrible name, this gene appears to be present in many of us. Also check this website MTHFR reaction link No mention of bad reactions to vaccines. Another good blog about the MTHFR gene is this one The skeptical beard MTHFR gene Again, I remind you, I have a limited knowledge of science.

So having said all that, here is a slightly different perspective:

Some people on the autistic spectrum do feel their systems work better if they change their diet. Please note, they don’t feel it will “cure” their autism, but does help with anxiety and general well being. Autistic adults are often the best guidance for our kids, and it is great to be open minded to discussing these things. If I dismissed these opinions, I would be no better than a well know Autism Charity who likes the colour blue. With that in mind, I will share this link Autism Channelopathies

A lot of this will challenge with what is written above, but in my opinion, if you are working to improve your health, rather than trying to change a part of you, I guess it can’t hurt.

My friend Tania Melnyczuk has released a couple of YouTube videos called ‘optimising autism’ where she and colleagues have worked with medical professionals. She feels many of the diet changes and supplements she suggests have helped with reducing severe sensory issues

A few Autistic adults that I know are following this method, and believe it has enhanced their lives.

With that in mind I will share her first video here, which links onto the second.

Optimising Autism

There are many parents who do believe a change of diet has helped their child immensely, and I always think it is good to listen. Be open minded, but never with the attention of ‘curing’ Autism. The thought of trying to get my 14 year old to change his diet just now is pretty much impossible, but if he wishes to try it as an adult, I will certainly show him all the support I can.

So when I am looking for stuff to help my kid on the internet, how do I know what is science based, and what is psuedoscience? There is much. Well basic rule of thumb is, look at who wrote the article, if its a science based journal, it is might good. If its not got a “sensational title” and the article Is paid by clicks, again not always great. Pub med and Harvard articles are also good, I have been told. If you have the time, vision and intelligence (unlike me), to sift your way through all this, then it might be worth doing. http://skeptiforum.org/a-guide-to-lookingA guide to looking smart on the internet -smart-on-the-internet-how-to-find-and-evaluate-online-information/ This is a great guide to help. Any articles you read, its good to get consensus from the Scientific community.  If you ever find yourself falling for any pseudoscience reasons, just look at this link  MRI scan shows differences in Autistic brain

So I think its worth the money looking into Treatments, what should I look for?

Ok, firstly you need to understand your child will always be Autistic, this will not change. Repressing any traits can be damaging mentally. Any treatments need to be done purely on improving general health, in my opinion.

Any treatments which come with FDA warnings or untested medication should never be approached. Allowing your child to be subjected to experimental drugs, is, in my opinion, very irresponsible. Even if a treatment appears to help, no peer based reviews, or control group studies can leave your child vulnerable to a whole host of different health problems. These studies are there for a reason, your child’s safety.

Do your research above, make sure you aren’t drawn into psuedoscience. Any mention of recovering from vaccine injury, or ‘Big Pharma conspiracies, be very suspicious.

Be aware of the pros and cons of a diet change, do the positives overtake the restrictive diet, which may mean restricted activities and life quality? Will your child need to avoid that trip out to help with his social skills, will it prevent him going to a new friend’s house for his dinner? Would it prevent him sitting with the other kids for school dinner? Would Granny who babysits a lot approve, would she stick to it? Would the tension and anxiety it may create overtake any benefit of the diet? Something to think about anyway.

Is doing these treatments delaying your ability of reaching ‘acceptance of your child being Autistic?

If you can pass all these questions, then, good luck with your journey.

Remember your child is not sick, Autism is not a disease. Certain supplements, diet changes, may help general health, like everyone else. Further research may result in you gaining a plan which may optimal for your child’s needs, but tread carefully.

Like every other child on the planet, a good healthy diet and plenty of exercise can really help. Exercise is good for anxiety, and it releases endorphins, which are pain relieving substances, which cause a sedative effect, which  is calming.

In my experience Sensory Issues and Communication difficulties are nearly always a reason for behavior you don’t understand. That is where a support network is important. There are many on the internet, local support, but also internet based ones. Spend time learning about sensory issues, and how to help your kid with communication. Once you have understood the issues relating to your child, it can get easier. Ask for advice from other parents of Autistic kids, and also Autistic Adults, there are many, more than happy to help on social media. Believe it or not, they are not all confined to ‘Group Homes’ . Don’t fall for the “Treatment” Scaremongering.

I would like to thank everyone who has helped me with this, you know who you are.

Thanks for reading.

Heather

Please read my other blog about alternative methods which may help your child, from the experts – Autistic Adults

Optimising well-being, peace of mind and happiness from Autism Experts – Autistic Adults