My 4 years old son is mildly autistic. He is doing well, attending a regular school and learning to interact with people.
I first suspected he was different because he didn't locked eyes with my wife when she was breastfeeding (I have 3 older kids to compare). He learned to walk in time, but he was not pointing to the things he wanted (instead used to grab me by the arm and use it like a tool), and he was unwilling to look at something we were pointing like a neurotipical kid does. I saw many other signs, but my wife was always in denial until he was 2.5 and I showed her some videos of autistic behavior on Youtube.
Long story short, it almost ruined my marriage (my wife felt like I was torturing her by sending her material about autism). I don't know why I knew more about autism than the pediatrician, but the subject always interested me.
My advice is: if you are suspicious, get your son diagnosed by a specialized neuropediatrician (do not waste time with someone who is not well prepared to diagnose autism).
Another anecdote here: Both my daughter and son are on the spectrum (high-level autistic, or aspberger).
Son was diagnosed at age seven, daughter at age fifteen. Generally it can be harder to pick up with girls. They tend to be better mimics and it can present much more subtly. I really wish we had figured it out sooner with our daughter – she has had a lot of issues with anxiety and school refusal for the last few years, and I wonder if had had the necessary information earlier like we did with our son, how much of a difference it would have made. (Although both are autistic, they present so differently it was not obvious.)
So I reiterate scardine’s exhortation to seek a diagnosis and early treatment if you suspect there may be autism at play. There’s a steep learning curve to getting your head around it and figuring out how to best help yourself and/or your loved ones, but you read hacker news, so you’re up for the challenge. Find (or start) a local community support group – it’s a hell of a lot easier than trying to hack it alone.
I replied to the previous commenter recommending they look into Auditory Integration Training - http://www.aitinstitute.org - the website marketing is mostly geared towards children with symptoms relating to the full autism spectrum, however there are also benefits for adults.
But the page advocates for a bunch of other things, from useless (Homeopathy) to harmful (claiming that Autism is related to Heavy Metal Toxicity, although the link is broken).
It's unfortunate that autism is a field where quackery of all kinds is widespread.
I haven't read the Wiki, however Wikipedia includes a balance of all opinion and thought on any given topic - whether they are using science to back it up - or not. AIT lists 28+ clinical trails on their website - http://www.aitinstitute.org/ait_clinical_studies.htm
Did you read my comment with my experience? What were your thoughts on my experience and explanation?
Just took a quick look at on Wikipedia link you made to the section "Insufficient efficacy and evidence basis" - they likely should update that with links to the other clinical trials.
The other part to AIT is that in order for it to have a greater impact you have to also remove/fix other factors that could be overwhelming the body - food sensitivities, unknown allergies, digestive problems, etc - which people then of course can not then 100% claim that the sound therapy aspect had an impact. For me, I know it did because the result was dramatic - it wasn't placebo. That's my qualitative data to add to the mix. I'm not sure what process or protocol that research reference in the Wiki page on AIT used, don't have time to thoroughly review it and I'm not an audiologist or trained in all aspects of AIT either; my audiologist is also a naturopathic and homeopathic doctor - so his breadth and depth of knowledge and understanding of health systems of the body would give him better insight into what's important and what isn't. I welcome the skepticism though.
Quackery permeates every field from mild headache to cancer, but it's easier for people to fall for it (and for quacks to make a quick buck) in fields where science has yet to give us a good picture. I hope the situation will improve as research continues and we learn more concrete facts about autism.
Or people to be skeptical because science has yet to give us a good answer, although a lot of the time the leading edge of medicine and science and skepticism is more about education and knowledge permeating society. Stem cells have been in use since 1991 on race horses to heal them - big money in race horses which is why it was tried there - however it's only just starting to become mainstream for people. That's 26 years for the science and knowledge base to develop and reach people - doctors and otherwise.
Thank you for sharing your story. As a guy who's about to get married, I began paying more attention to articles like this one. I am now ware that early diagnosis is important. I will make sure to see the right specialist if I suspect something.
My two older boys who are adopted were diagnosed with aspbergers.
No one, when they got older, would think they have been diagnosed with it. My oldest still walks on his tip toes at 24, but he is a senior in college and is in the National Guard. They both had nightmare of a childhood prior to coming to my house.
I have worked for several years as a TSS as a second job and the earlier you can get therapy started the better the 18+ outcomes will be. Don't wait till they are older to see if they will grow out of it.
PS - If you have had a bad TSS experience or any other worker with your child just request a new one and learn what approach you are using. Parents are the number on expert on their own child and make yourself into the best expert you can be.
Just out of curiosity: why do so many people misspell 'Asperger' as 'aspberger'? It strikes me as not obvious enough to be so common, and yet here we have two sibling posts that make the same mistake.
It's not a problem, of course, I'm just curious (and secretly annoyed, but that's my problem)
Guilty - I copy and pasted the spelling. I really have a hard time with spelling of English my whole life. There is no way for my brain to make sense of it. Phonics is a myth. I got straight 4.0 in college and that included thousands of pages of papers and learning Ancient Hebrew and Classical and Koine Greek.
Great advice. Your story is very similar to mine. The family doctor at the time was no help. He was showing clear signs at age 2, and she told us just to wait and see if it gets worse! You really have to go to someone who is trained to recognize autism.
It was the pediatric dentist saying something at age 4 that made us realize we need to get him checked out (even thought my mother-in-law had been mentioning the lack of eye contact for some time), and he gave the exact same advice you did. Go to someone who knows autism.
We went to a development psychologist and that was when we both realized. My son is now in a PAC (preschool autism class) and getting the help he needs, and we are learning a lot too.
If you haven't heard of Auditory Integration Training, I recommend looking into it. http://www.aitinstitute.org - the website marketing is mostly geared towards children with symptoms relating to the full autism spectrum, however there are also benefits for adults.
I'd love to hear more about your experiences with this! My daughter does not appear to be autistic, but I have long suspected she has hyperacute hearing.
Did this work for you or someone you know? Their intro video only states that it "strengthens and balances your hearing system", which is too fuzzy for me to reason about. Thanks!
I just read the article ... it has absolutely no explanation as to why AIT wouldn't or couldn't work - and I just noticed it's from 1994 - 23 years ago.
So many of the studies (http://www.aitinstitute.org/ait_clinical_studies.htm) seem to have small sample sizes or other issues (e.g. some have no control group). I'd love to see a large, well designed study to convincingly show the scientific validity or lack thereof of AIT, at least for people on the Autism Spectrum.
Draw your own conclusions from the studies that exist and the reviews. Based on those, to me, it doesn't sound promising.
After fully reading the link above, I first noticed that the author is a psychologist and not also an audiologist. Not saying that to discredit him, other than to point out he might not be the best person to reference, who may not fully understand the research he's reading - especially because they don't mention if he actually has training or personal experience doing the sound therapy/training or offering it to others. Likewise, he references the 28+ clinical trials that AIT links to on their website, however he doesn't go into any of the that research himself to analyze it and tell us why. Yes, we'd have to read all of the referenced material to perhaps start to understand the process -- however unless we've also been trained to offer AIT properly then we can't know if their protocols are flawed --- unless there was, as I wish, an official response by AIT people to outline where the was or may have been problems with their process, including perhaps offering AIT to people who shouldn't have been candidates to begin with.
I agree more studies is always better. It's trickier when something that maybe only benefits a very small % of the population.
Did you read my comment explaining my experience and what I know about AIT? I'd love to hear your thoughts on that qualitative data.
What I'd be curious about is having someone who's experienced with AIT, a practitioner and has deep domain knowledge, to see how they would counteract the information in articles like the one you posted.
I also always have questions for professionals/audiologists and organizations that are skeptical of AIT. I wonder if they have a sound (pun intended) explanation for why some people can have a diagnosable imbalance in their hearing, whereas others don't; I explain what I mean by hearing imbalance if you read my longer comment I linked to above.
It helped me in part with hyperacusis - hypersensitivity to sound. One theory relating to how problems can start is from painful ear infections. Sound causes pain and then the mechanism in the brain that wants to keep track of and avoid pain starts to abnormally develop associating pain with sound - so you can avoid it. ADD/ADHD, depression ... all seems reasonable to stem from this - if you're constantly focusing on sound or attention drawn by sound then you can't concentrate on thought or other, likewise, that prolonged state could lead to depression. There's quite the spectrum of what can come from it, also depending when the developmental delay occurs.
The training/therapy is 10 days over 2 weeks (5 days per week), 2 sessions per day, once in the morning and once in the afternoon, each session being 28 to 33 minutes long - using specially modified oscillating sound based on your audiogram.
The first time I did AIT was in my early 20s. The audiologist I went to, who is also a naturopath and homeopath, set me up across from a ~7 year old boy with his mother. He had the 'zombie' autistic look - no expression on his face, arms fixed by his. His mother would point to the chair and tell him to sit, and he'd go and sit - so he could understand. In the boy's case, I had asked the audiologist - he explained to me that the boy was able to receive input but he was blocked from outputting. What I observed over that initial week, along with the benefit I personally had from doing the sessions, sold me completely on the subtle power and benefit of it. At one point within the first week the boy start saying single words and then a few words together. He wasn't just saying the words though, he was YELLING them. Why? He had never spoken before so he hadn't learned volume control yet. The second week on the Monday he was so excited for the session that he ran into the living room and his seat without taking his shoes off. He sat quietly, with a huge smile on his face, just flipping through a kid's book - I presume reading it.
AIT should be mainstream and helping that happen is part of my life's work - that I at least hope I'll eventually be able to integrate into my plans.
You can actually do an audiogram to check for an imbalance in hearing as a diagnostic tool - it's a good way to verify if someone is likely to benefit from AIT.
Currently audiologists during a hearing test just check to make sure you can hear well-enough. Can you hear at 15 decibels in both ears? Great. It is simple however to check for an imbalance in hearing. You check instead of how LOW of a decibel you can hear in each ear. For example, if in your right ear you can hear the 1000 Hz frequency at 15 dBs and in your left ear you can hear at 12 dBs, then there's an imbalance of 3 dBs. Your brain and body is a system wanting to find homeostasis - so it should correct for this and there shouldn't be a difference. That can tell us that something is going on. In fact, at certain frequencies if there is an imbalance you can accurately predict the behaviour of people -- if there is an imbalance at 1000 Hz then that person will 100% of the time be depressed, medication won't help them, nor will talk therapy -- they are stuck in a fixed state. There are at least a handful of other frequencies that if there's an imbalance showing then there are the predictable behaviours, and that can be used as a guide for talk therapy - along with doing AIT to help the brain become unlocked/malleable again. It's quite fascinating.
There's another sound therapy method called the Tomatis Method. The difference between the two is simple. If the developmental delay or problem occurred while the child was in the mother's womb, then Tomatis method is needed -- it focuses on frequencies that the body/ears/brain hears while in the womb. If it's anytime after birth then AIT is supposedly sufficient. The Tomatis method is a much longer period of time listening - I believe something like a minimum of 3 hours of listening per week over 3 months. There is a book that's out of print that I've never read, though I've been meaning to for a decade now - called Hearing Equals Behaviour - the audiologist told me about it.
The audiologist also had told me to stop eating wheat, as he had seen the progression of what I was dealing with caused by wheat; interestingly enough wheat is linked to childhood ear infections as well - I'm not sure if it's related to that there's an opiate in wheat, however I am very affected by wheat and have avoided it since then.
Here's a provider's website that has a simplified pre-care questionnaire, for both children and for how symptoms present for adults:
I hope this helps fill in some gaps to the vague marketing speak of "strengthens and balances your hearing system" - although apparently it does help the ear muscles flex more properly - I suppose like helping get it out of a spasm state. That seems to be easier for people to grasp as a concept, though you're right it doesn't really explain the value of it.
Feel free to email if you have any questions: matt - at - engn - com
I first suspected he was different because he didn't locked eyes with my wife when she was breastfeeding (I have 3 older kids to compare). He learned to walk in time, but he was not pointing to the things he wanted (instead used to grab me by the arm and use it like a tool), and he was unwilling to look at something we were pointing like a neurotipical kid does. I saw many other signs, but my wife was always in denial until he was 2.5 and I showed her some videos of autistic behavior on Youtube.
Long story short, it almost ruined my marriage (my wife felt like I was torturing her by sending her material about autism). I don't know why I knew more about autism than the pediatrician, but the subject always interested me.
My advice is: if you are suspicious, get your son diagnosed by a specialized neuropediatrician (do not waste time with someone who is not well prepared to diagnose autism).