Bear in mind that this is just my own personal thoughts and we are only starting down the long road to recovery.
Yes, recovery. I've spoken directly with people who have severely Autistic children recover to lead a normal life and heard from more on Facebook.
No, I do not believe that Autism is "just a different way of looking at the world".
Sure, many Autistics are just fine but it's called Autism Spectrum Disorder for a reason.
I believe I sit towards the top of that spectrum. I am certain my wife does too (so is she!). In fact, she's further down than me. I realised that when met her because my previous girlfriend had worked with Autistic teenagers so it was something I was recently familiar with. I figured I could relate! :)
Yes, it's great at times; I am apparently a pretty damn good programmer. My wife is a truly first class linguist. Our ability to focus heavily on a problem pays dividends.
But we are right at the top of the spectrum.
For others, they never learn to get out of nappies.
That, is not "a different way of looking at the world" that is a disabling medical condition.
Firstly I would keep a grip on the fact that this condition can be alleviated and even effectively reversed. Do not give up hope. Ever.
But when you do (and you may), get a grip and come back to it.
It sucks but you are the only one who can help your child and you have to keep your head.
In fact at times, you also have to remember to "put your own oxygen mask on first". Make sure you are looking after yourself or else you can't look after them properly. We are actually all seeing the same doc as a family and getting huge value from it.
Unfortunately the variation in how it affects people and the comorbidities (other diseases that tend to come with it) means it's very complex to treat. Heck, most doctors still believe it can't even be treated.
You cannot simply treat one child the same way you treat another. What works wonders for one child may do nothing for another. Or even make things worse.
I want to emphasise that: If you try something which worked miracles for others but it has no effect, that doesn't mean there's no hope. I simply means that it wasn't appropriate for your child (right now - it may even be useful later. This is extremely complex and context dependant).
One other counter-intuitive thing to note: If you try something and it makes things much worse; that is often a very big clue that you may in fact be on the right track. Although it may actually inappropriate for your child, it may just be that you have found something very valuable for them and you simply need to go "lower and slower".
How long to keep pushing on? I have little experience to draw on but from what I've read: Typically a couple of weeks can pass while things are worse but three to four week in and you should be seeing an improvement. That's a long time to push so unless you have some good reason to think it's likely to help I personally would be considering swapping to other things which might have a faster payoff first. And then come back to it later (preferably with some guidance from a good doctor or others who've been down the same path. I'd also ask on a Facebook group for the experience of others trying the same thing).
Remember, everything I list here is very personal but I hope there may be something in here which is a key factor for you:
Concentrate on the gut! I will expand on this when I get a chance but really, the gut is key.
Also sleep is critical. Unless the gut and sleep are good, everything else is going to be really hard. Check my mention of the Gominak Protocol on the Progress and Timeline page.
I'd buy zinc and B6 in that order and start each one at a low dose, separated by a week (to see any changes) and ramp up. (See Supplements)
I'd get and try ACE: Adrenal Cortex Extract. It has been the most instantaneous and amazing effect of any supplement so far. (See Supplements)
I'd get TRS Coseva as soon as possible and start as soon as possible regardless of anything else. Really, it's very easy and for very many people it gives amazing results. See Supplements
I'd try Mega IgG2000 for calming the gut and immune response (this was one of our absolute biggest game-changers).
I'd join the "Recovering Kids | Biomedical Healing" Facebook Group. A goldmine of info that is well moderated. Be prepared for some scary stories but also there is a lot of hope in that group. Some of the moderators have amazing stories of recovery. Always remember with any support group there is an unavoidable bias regarding seeing "harder" cases discussed. Either because the people posting are new and have not had the benefit of applying the techniques yet or because their particular case is simply very complex. How many people whose children recover do you think spend their time posting in those groups?
I'd take the ATEC and record the score somewhere. This can be very emotionally difficult. Our son scored 82 in February but then 49 in late April after doing a lot of work with supplementation (a normal 3 year old should score 0).
I would not expect help from most ordinary doctors. Frankly, and sadly, probably the reverse.
I would be very cautious indeed who I discussed the area of biomed interventions with, for related reasons to the above. Sadly not everyone understands you are dealing with a manageable medical condition as opposed to an utterly mysterious psychological one.
I'd look into getting help from a Walsh trained practitioner: Dr Walsh And Autism and try to also read his book; Nutrient Power. Edit: This used to say "I personally think that this has the best evidence, for being is the closest thing to attacking the root cause that we can currently do for Autistic kids." However, although I still think it can be critical, the evidence that so much of Autism is driven directly from the gut is becoming overwhelming.
I'd get an OAT (Organic Acids Test - urine) and HMA (Hair Mineral Analysis) as soon as possible. You'll need a doc to interpret the OAT and maybe even order it. Then you can fine tune a lot of the supplementation.
I'd cut out wheat, dairy and soy (this should be very obvious by now, unless this is the very first thing you've ever read on Autism!). That was mostly easy for us since we haven't eaten wheat or soy for years anyway. We do make very carefully filtered ghee but that's a gamble we're willing to take at the moment. Luckily our son actually doesn't like creamy things!
I'd look at the video here https://unblindmymind.org/ and reduce free glutamate in the diet. It's mostly in pre-prepared foods and things like smoked sausages and preserved meats. Most fresh food is okay but broccoli is a little high. Note: Although I think this approach is very valid it appears to go after glutamate as if it's the problem instead of being a symptom of a problem. Probably the conversion of glutamate to GABA is not functioning properly and you need to support that with high dose B6 and/or P5P at the same time as avoiding most glutamate. Our son was very sensitive. Now he's doing better and on B6 he can certainly tolerate even something like a little smoked sausage without any visible hyperactivity.
I'd get some melatonin for the likely sleep problems and give it only when needed and at doses of up to 500 micrograms (that's half of 1 mg). We find 125 micrograms is fine most of the time. This can be utterly life saving and something our doc highly recommended. It is easily available in the USA. Legal for import in the UK. Other countries vary and you may have to check. Though posting within the EU should work just fine if you can do that (Try https://mass-zone.eu/en/?string=melatonin ).
Also for sleep, I'd get a nightlight from lowbluelights.com so any light at night doesn't make them more awake (never use ordinary LED or fluorescent lights! Too much blue) and also a screen protector to block blue light if you let your child use a screen in the evening. They are easy to remove and put on each evening. Both are life-saving and hard science. No woo-woo here.
I'd get Epsom Salts and bath them using 2 cups in a bath for at least 40 mins (according to our doc) every day I could. This massively helped aggression for us. Again, good hard science on that (for example). However, just like anything else, build up a little slowly! Rarely a child will react strongly to them (aggression and meltdowns) at first.
I'd fix their gut. See The Gut is CRITICAL
I'd keep my temper even when they are gouging my eyeballs and scratching my face, since getting angry really, really does only make things much, much worse. Please read and re-read: https://autismtreatmentcenter.org/knowledge-base/how-to-handle-aggression-from-your-child/
I'd get an ERMI (Environmental Relative Mold Index) a US EPA devised test that uses DNA PCR analysis to figure out what kinds and what levels of mould there are in a home. It does not matter how new or old your home is, it could be affected by mould (mold if you are from the US!). The swab test is apparently the best thing to go for unless you happen to be a specialist mould testing contractor. This company appears to be the best provider: https://www.mycometrics.com/online.html
Only if I was going to be at a computer keyboard most days: I'd make a spreadsheet (I like Google Sheets - but anything in the cloud, like an Excel sheet in Dropbox, so you don't lose the lot to a hard disk crash) and make a date column down the side and log everything I could stand to log. Supplements, scores for sleep and aggression out of 10, columns for; gut notes, sleep notes, speech notes, general notes. It is amazing what you forget and any info like this can really help a doc. Even if you only log sleep, aggression, poo and a space for a free-form note it's so, so useful.
If I had a smartphone not a laptop: I'd log everything dailly that they ate and how their insides were (poo log!) using an app which fires up fast and doesn't get in your way. (So, Notes app on Apple but not Evernote; it takes too damn long to launch). And saves to the cloud (again, Notes with iCloud enabled) so that losing your phone doesn't lose your log. I'd use just one new note for each month. This can be invaluable when you're wondering if X might be causing Y symptom. When did they have X...?
If they are a restless sleeper, I'd get an iron level checked (it must be via blood ferritin level, it's the only accurate way) to check they are not anemic. Our son showed no signs of it but he was right at the bottom end of normal on the test. So a little Spatone should bring that up and may improve his sleep.
If I was concerned about speech I'd try a TINY bit of L-Carnosine (like, the rounded end of a capsule to start) and be very wary of increased hyperactivity and aggression. It takes our son two to three days to come down from even a tiny bit of it but we did see surprising speech gains extremely rapidly.
I'd keep reminding myself "No improvement in health is ever, ever linear". When you see things improve, don't be surprised when they get worse again. This is complex biology and things never just get better without taking a back-step along the way.
I'd probably take a minute to read a post on my other site: Beware Of Both The Woo-Woo And The Science
To be continued...
Note; We are doing/have done all the above but we are also doing far more on a day to day basis, based on the data from the tests (like the OAT etc) which were interpreted by a very, very knowledgeable doctor.
These are things that, at the time of writing, we have not tried. We may or may not try them in the future but all of them have come up over and over again on Facebook groups and so are well worth knowing about.
Remember although it seems likely that there is no single cause of Autism it does on the other hand seem certain that there is no single pathway to recovery from Autism.
I have seen so, so many people report great success with this. Many have recovered their children with it completely.
It is "simple but hard". Simple because you just give a dose of ALA (Alpha Lipoic Acid) every 3 hours for three days. Hard because it really is every 3 hours, 24 hour hours per day (not keeping to the schedule is very dangerous).
This has very good science underpinning it and appears to be very low risk.
More info here (from the woman who started the Recovering Kids Facebook group): http://www.regardingcaroline.com/andycutler2.html
Although this can can work miracles for some it can have very bad effects on others (but frankly, that is true of most interventions). Some people see initial success and then bad SIBO (Small Intestinal Bacterial Overgrowth) puts them way back. So, be careful of the hype.
However the hype is not without justification. People have seen enormous results from this protocol.
At a very high level it involves only olive oil, fish oil and inulin (a prebiotic) and no probiotics (critically). The brands used are very specific and thought to be critical to the protocol working. Sometimes, and only on prescription, Rifaximin ( an antibiotic which stays in the gut) is used to knock back bacterial overgrowth. Also for patients actually seeing Dr Nemechek an electrical device aimed at stimulating the Vagus nerve might be used.
The amounts required are not very large. For example for 1-5 year olds the daily doses are: Olive oil; just cook with it. Fish oil; 1ml (1/5th of a teaspoon). Inulin fruit gummies; 2.5.
People that have had success with it can occasionally be rather vociferous in stating their opinion of it but, again, that's because the results can be amazing. Just beware of that if asking question in the Facebook group as it has a reputation for banning members rather summarily.
This is the main Facebook group for it: https://www.facebook.com/groups/TheNemechekSupportGroup/
Once you join it really is worth your time to read:
I came came across this mentioned by Chris Kresser here: https://chriskresser.com/resolving-the-underlying-causes-of-adhd-and-autism/
Kresser mentions that it was created by Al Czap - the founder of Thorne Research. Thorne (and, I assume Al Czap) patented the process to make Methylfolate around the year 2000, so the name "Thorne Research" is not a marketing ploy. They did (do?) real research and Al Czap is a bit of a legend in supplement formulation.
You need a doctor to order from the main site but it can be found on other sites:
Tesseract site: https://www.tessmed.com/product/aurx/
Site which sells it in the EU: https://skanstullshalsokost.se/halsa-kosttillskott/vitaminer-mineraler/fettsyror/tesseract-aurx-56-7-g/
Note: Although we have not tried this, that is because we have bought some and it smells just awful so we currently can't work out how we could get him to swallow some even once, let alone daily!
If you are having an immune response to folic acid you will effectively be deficient in it, even though you show up as having normals levels via testing.
This has been the absolute key for many parents I have read about.
However you can prospectively raise Folate (either by Methylfolate or Folinic Acid. Preferably not Folic Acid since many people do not actually metabolise that form). I am absolutely no expert in this so you will need to research more for yourself.
However if you are getting blood drawn anyway, adding in a FRAT seems like a good idea. Note however that it is not absolutely certain to show that there is a problem, if there is one to be found, but it is far less invasive than the sure way of testing. Which is a lumbar puncture and test of folate level in the cerebrospinal fluid.
Ordering a kit is free but you will need the name of a physician you are working with. The actual lab test is $250 at the time of writing but you will need to pay for the blood draw (which you may well be doing regardless, of other testing) and also the shipping to Iliad Neuro (which may need to be on ice, I am not sure).
http://iliadneuro.com/information-on-frat.html
I need to preface this carefully: I am one of those of a scientific persuasion who thinks that, knowing the underlying premise of homeopathy, it is utter bunk. Placebo at best. A waste of money and time at worst. For most of my life if you'd have told me I was going to mention the possibility that someone might want to consider looking at using homeopathy I would simply not have believed it. Not a chance.
But, I need to make two important points here;
1) Over and over again (at this point, easily into the tens of times) I have seen people on multiple Facebook threads say that the real game-changer in their child's recovery was homeopathy (usually they say "classical" homeopathy. I have no idea what that is at the time of writing). I have trouble explaining that as purely placebo as it's hard to see how Autism could be influenced very much by the expectations of other people (by definition the Autistic child cares nothing for what others think). Many of these people say they tried everything else with little result and homeopathy was the turning point. Often they say they had no hope it would work and did not believe in it, until it worked.
2) Although homeopathy appears to go against our scientific understanding, to entirely dismiss it is actually deeply unscientific. This is a point Dave Asprey makes very well. In essence he points out that science never says that our current understanding is an entirely accurate description of the universe. Quite the reverse. Science must always take into account new data, even when that data does not fit the model. Or else it is not science but simply dogma. So, dismissing homeopathy simply because "it can't possibly work" is simply dogmatic and not a scientific view at all. To be clear this point doesn't argue that, therefore, homeopathy must be real. It simply says we can't say for certain it is not real in the light of so many data points which appear to say it is. Something does appear to be going on here, no matter how ludicrous it might seem to some of us.
Since the worst-case outcome of trying classical homeopathy is likely to be a waste of some time and some money (not even a very large amount, in the context of treating an Autistic child), plus the possible swallowing of pride, it seems silly not to at least try it.
My one caveat is that I would not want it to interfere with other treatment modalities in terms of the cost of time or effort. I have extreme difficulty believing that homeopathy could correct a zinc/copper imbalance better than high-dose zinc supplementation ever could.