Alice in Autism Land

My 4 year old son, Julian, was diagnosed with autism about 6 months ago. Julian is completely nonverbal. Since then, I’ve joined support groups, researched his condition, and talked to multiple professionals in the field.me and juice

Now, I’m a college educated woman. I consider myself to be rational, smart, and resourceful. But the more I research, the more questions I have. With every new article I read, I feel like Alice sliding down the rabbit hole.

The avenues of research range from genetics to environmental… from gut health to mom’s health during pregnancy. The sheer magnitude of research is completely unsettling to me.

The more I read, the more I ask “Why?” Not in the context of “Why does my baby have autism?”

I have real questions about the causes, diagnosis criteria, and conclusions made from ASD testing. Here are a few I’m currently wrestling with:

1. How do doctors conclude that children who show deficits from birth, have the same condition as children who regress later in toddlerhood? Julian has been delayed since birth. He didn’t reach certain milestones on time (or ever.) There are other children who reach their milestones, learn how to talk, and then go backwards. Logically, that seems like two different processes to me.

I have the same question in regards to bright, socially awkward children having the same diagnosis as low-functioning, nonverbal children. Again, It seems to me that there are different functions occurring.

I know there is a ‘spectrum.’ But that explanation makes me even more confused. I want to know the reasoning behind the decision to combine so many different attributes into one diagnosis.

2. How did the number of autism diagnoses explode? I recently read that 1 in 68 children is now being diagnosed with autism. That increase can only partially be explained by raised awareness and improved testing. What else is causing this number to grow?

This is where I become confused. I’ve read articles linking autism to heavy metals, vaccines, pesticides, household cleaners, pollution, processed foods, gluten – The list goes on. As a mom, I don’t have the background to comprehend these positions. I also don’t have the time to become a neurologist, nutritionist, environmentalist, and geneticist.

3. Why isn’t my child able to point to things he wants? That’s a pretty basic skill. What is actually blocking his brain from showing me what he wants? This brings up other questions I have about related disorders such as dyspraxia, PTSD, and OCD? How are they all connected?

4. Why isn’t there consistency among professionals? There are reputable doctors claiming that parasites, heavy metal concentration, and poor nutrient absorption may be to blame for autistic characteristics. But when I ask Julian’s doctor if we should test for any of those, he simply says, “No.” Why is there such a disconnect?

5. Why do some children need to bite and self-harm? The range of self-stimulation is astounding. Some flap their hands or rock. While others need to bite, chew, or even harm themselves. What is the process behind this need for ‘input,’ as they call it in the OT world?

My list of questions goes on and on… It’s frustrating to the point that I feel like going to medical school myself.

incoatsTo make matters more confusing, Julian has an identical twin brother, Dominic, who presents with similar delays and behaviors. Dominic was tested for autism, but was found to not “have it.” (Oh, the confusion!)

Please don’t get me wrong. I’m thankful that there are doctors working tirelessly to find causes and treatments. And I realize that research of the brain is, by nature, hard to perform. I’m also thankful that, even with a relatively low understanding of autism, there is still a diagnosis allowing those affected to gain access to treatment.

I feel certain our hard-working researchers will make major breakthroughs. As time passes, there will be a better understanding, a greater consensus, and different diagnoses. Hopefully then they will be able to say, “Your child has _______, a condition formerly included on the autism spectrum.”

What are some questions you have about autism? What resources have you found helpful?

33 Replies to “Alice in Autism Land”

    1. My son was diagnosed two weeks ago and he is 2 years old. You have just expressed what I am feeling completely!!!! I’m more confused the more I research. My brain simply doesn’t know where to begin, it’s completely overwhelming and exhausting.

      Liked by 1 person

  1. Well done, Meghan!!!

    As an autism mom myself… whose son was diagnosed after he turned 30 due to the expanded criteria of the DSM V. I share your frustration. David’s diagnosis was no surprise to me, of course. I’ve known for years that he was on the spectrum. And it was important for him to get this diagnosis as an adult so that it’s in his record in case he ever needs the benefits that it can provide.

    so… why the increase in diagnosis?? A large part of the increase has to do with defining and then broadening of the diagnostic criteria. I can remember when I was a kid in school (in the dark ages) and there weren’t ANY autistic kids. But there sure were a lot of kids who couldn’t function well in the classroom, got in trouble a lot, were subject to horrendous teasing and harassment from other kids, etc. A diagnosis would have helped those kids a LOT! But no one knew… Another reason for increased diagnosis IMHO is that elementary schools have become less developmentally appropriate due to the inordinate amount of testing required. So kids no longer have recess, or it’s very limited… they’re expected to read earlier than is appropriate for the majority…. they have too much homework…. so the expectations for behavior have outstripped the developmental abilities of many children.

    and I know that you know… but I’m going to say it anyways. We need to read stuff with caution…. and remember that many websites pass on wacko information. While I believe that diet can certainly be effective in moderating some symptoms, I look pretty skeptically at the claims that diet causes developmental disabilities.

    I do think you’re absolutely right that someday we’ll have better descriptors for the different parts of the autistic spectrum.

    Liked by 2 people

  2. Great stuff, Meghan – always ask questions!

    To give you a quick short answer on the vaccines, heavy metals, etc, stuff, a lot of people are desperate to find who is “to blame” for their “damaged” child.
    As an autistic person (some people “have autism”, others “are autistic”. It’s a matter of personal opinion), my opinion of this is generally less than charitable, as I find it insulting. As a parent, and as a person of an autistic teen, I understand where they are coming from, even if I don’t agree with them.
    To give you a slightly longer answer, to date, there is no reliable, peer-reviewed, research indicating that autism, in general, is caused by vaccines, the use of aluminium in them, or heavy metal toxicity. Many of the people pushing what they claim or believe to be tests or treatments for these are shilling (knowingly or not) for people who are selling these to make money.
    A good test for any proposed therapy is to see how wide a list of conditions it is supposed to treat, and whether they are related to each other; if it will apparently cure everything and is expensive (“but worth it!”) then it is probably snake oil, or at least needs careful and critical investigation.
    Your Doctor sounds like he’s got his head on straight – they usually do.

    Liked by 2 people

  3. 1. How do doctors conclude that children who show deficits from birth, have the same condition as children who regress later in toddlerhood?
    Autism is a diagnosis of behaviors, not something causal. Usually when we talk about illness we use a name that gives information on symptoms and causes. For example, if we say your child has the measles, you know that your child will have a rash and high fever (among other symptoms) caused by a specific virus. However, if we say your child has the stomach flu, that simply refers to the child having a fever and throwing up; there are dozens of causes of the stomach flu. Autism is more like the stomach flu: it refers to where your child is now, not how they got there.
    1a. How do bright socially awkward children have the same diagnoses as low-functioning, nonverbal children?
    This was a decision fundamentally made to make consistent diagnosis easier. It makes sure that kids have access to any and all services they might need. With spectrum disorders, it can be very hard to create hard cut offs that don’t result in some kids losing out. By losing out, I mean that maybe a kid just barely misses the lower category, limiting what assistance he or she can have in school. As a result the child is less successful.
    2. How did the number of autism diagnoses explode?
    I wrote an entire blog on this, but will give you the short version. Numbers haven’t exploded. Like you mentioned, there is more awareness which leads to more diagnosis. But there is also the issue of diagnosis switching. For example, kids that before would have been given the label mentally retarded (older general catch all term) are now termed autistic. Additionally, like you mentioned, mild cases are being included in the autism spectrum disorder. That expands the numbers too. This is the link to the article I wrote explaining this in much more detail and with sources (https://vaccinesaresafe.wordpress.com/2017/08/24/the-autism-epidemic-facts-and-fictions/)
    2a. I am going to address your concern about chemical causes in question 4.
    3. Why isn’t my child able to point to things he wants?
    The short answer is that we don’t totally know. The long answer is that pointing to something you want isn’t actually that simple. It requires you to identify your need (for example I’m hungry), recognize that eating will satisfy that need, and identify something near by that can be eaten. Then you have to recognize the cause-effect relationship between pointing out that edible thing to someone and them giving it to you. In people with autism, we frequently see that they seem to lack understanding of cause-effect. So I would guess that is where it goes wrong.
    4. Why isn’t there consistency among professionals?
    The truth is that there is significant consistency among true professionals. There are not reputable doctors that believe that parasites or heavy metals cause autism. Unfortunately, it can be very hard for someone without scientific training to identify reputable doctors. Anyone who graduates medical school *should* be able to read and understand the scientific research and convey it to parents. Parents *should* be able to trust that anyone with an MD is telling them the truth for the best of their child. But that is simply not the case. I can provide you with many sources to prove that autism is not caused by parasites, heavy metals, or problems with the gut if you’d like. (if you give me permission I will do just that in a longer blog post).
    The frustrating part about autism is that we really don’t know what causes it. We know that it is mostly genetic, with some prenatal factors involved (like age of the mother). If you are unsure if a cause is being touted by a reputable professional, search “cause + science based medicine.” Science based medicine is a blog ran by researchers and doctors who do excellent research and post science and source based information on a variety of things.
    5. Why do some children need to bite and self-harm?
    There isn’t a clear cut answer for this. Some research has suggested that people with autism have different brain chemistry which dulls their ability to feel pain. Just like you don’t feel any pain when clapping your hands, they don’t feel any pain when head banging. Despite not feeling the pain, the body still releases endorphins to combat it, resulting in the self harming behavior being biologically rewarded. Interventions to prevent the dulling of pain has reduced self harming behaviors.
    5a. In a pair of twins, why does one child have autism and the other not?
    Autism is mostly genetic, which makes it unsurprising that both twins have some level of delay. It sounds like the twin without autism (I don’t want to use names even though you have, just because I don’t know your children) is likely borderline. On behavioral diagnoses, there is some level of opinion involved. Another physician may diagnosis him as autistic. I’m not sure. Or he may just be borderline. If your other son needs assistance, I would recommend having him re-evaluated.

    Liked by 1 person

    1. Thank you for your comment. Additionally, thank you for writing it matter-of-factly.

      I would like you to write that longer blog post (heavy metals, gut, parasites), as I am very interested in learning more about that topic.

      1. I like your explanation of ‘where my child is now, not how he got here.’ Autism isn’t a thing; it’s behaviors caused by something or some things. (That’s frustrating for me.)

      1a. Good point.

      2. I am definitely going to look into this further. I’ll explain this with number 4.

      3 and 5. Those are great explanations to help me understand the processes behind the behaviors.

      5a. According to the autism assessment, Julian’s twin shows no signs of autism… not at all borderline. I am going to share another article with you that I have found very interesting. (In another comment)

      2 and 4. I’m going to get back to you on those when my kids are at school.

      Thanks again for taking the time to comment. Are you a doctor, yourself?

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      1. Here is the link to the blog I wrote. I just made it public, as I was waiting for your permission. I have linked to your blog as well.

        https://wordpress.com/post/vaccinesaresafe.wordpress.com/935

        I am a PhD candidate, so not yet a doctor. I’ve done 3 years of research in an autism research lab and another 3 in a neurodegeneration lab.

        I’ve not seen this particular article about NICU and autism, but I’ve read several other studies. I think that there is some merit to the concept, but I don’t think we currently are capable of studying it properly. As it stands, healthy children are never placed in the NICU, but healthy children have autism.

        So if we try to look at kids in the NICU and the risk for autism, it will always be confounded by the fact that there were often prenatal issues, traumatic births, and many other precipitating health factors. I definitely think that children who are born premature and sick have a rough go of it, and none of that does them any favors in neurological development. There has been direct evidence of autism prenatally, as well as direct evidence that autism is mostly genetic. So I think that these environmental factors are likely less important than others.

        Liked by 1 person

      2. Congratulations on your accomplishments!

        I read through the article and I’ll read it again when I’m alone. I appreciate you taking time to write it. Have you reviewed the studies you cited for merit? (In terms of sample sizes and procedures) I don’t mean to second guess you, but thats my M.O. these days. 😉 That anti-vax “study” ruined my sense of trust.

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    2. Thanks for your comments and for your blog. I am the grandmother to Meghan’s twins. I appreciate your fact-based comments and the level of authority you bring to this discussion. When we met with the psychologist who said that Julian’s twin was definitely not autistic, I challenged her, citing the studies that say that autism has a strong genetic component. How likely could it be that identical twins have such similar problems but only one has autism. I understand the need to comply with DSM standards, and it is frustrating as family members to have professionals shrug and restate their finding. Thanks for taking the time to respond to Meghan so thoroughly!

      Liked by 1 person

      1. Any time at all. I would be happy to answer any questions. I just recently added an email account to my blog that anyone can contact me at (madneurologist@gmail.com).

        I wish that psychologists would take the time to explain which behaviors Julian has that precludes him from an autism diagnosis. It would make it much more understandable. The DSM has done a lot to ensure consistent diagnosis, but it isn’t perfect and it still has flaws to work out.

        It definitely is surprising when one identical twin has autism and the other does not. Autism is about 83% genetic.So if we have 100 children with autism and their identical twins, in 83 pairs, both will have autism. In the other 17, one twin won’t.

        Liked by 1 person

      2. One of the other things I thought of after posting my comment is the tendency to compare twins to each other, rather than an objective standard. If both boys were seen by the same psychologist, she was likely unconsciously comparing the boys. Since one boy is non-verbal, if the other speaks at all, even if he is behind his marks, she might not count it as communication difficulty. The same is true of the other criteria.

        I don’t know that much about the boys, so my example is not specific to them.

        Liked by 1 person

  4. Very interesting. My son was diagnosed when he was 3. He is now 6 and atttending a mainstream school. For hi Early Years I fought for him to go to a special whereas people around me were fighting for their children to attend a mainstream school. The ‘stigma attached to attending a special school is so prominent in society that people aactually looked down on me for wanting to send my child there. However, I will say it was the best things ever! He was non verbal but within the year he managed to speak in short sentences; he managed to use the toilet independently (he was in a nappy prior to that), he managed to eat independently and he was generally a happier child. Now he is able to attend a mainstream school, have friends, access mainstream curriculum and doesn’t need a 1:1 fulltime! When I was fighting for him to attend special school, I met a parent who had a child on the higher functioning scale who wanted a mainstream school. My son was on a much lower scale . The children are now friends and she cannot believe how far my boy has come. The special school helped immensely! My mantra as always: Autism is Acceptable!

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  5. I was diagnosed with ASD on June 1, 2016 so I’ve had a little more time to absorb and acquire information. It’s something I do and have always done. As a father and and grandfather, I also understand the concern and desire for more information. I’ve always gone through that myself when any of my (now all adult) children have faced any diagnoses or issues. You ask some pretty broad questions that can’t easily be answered in a comment, but I’ll add a few thoughts I haven’t seen above.

    1. The short answer is because multiple populations studies over time showed that the presence or absence of clinically significant language delay indicates nothing about later ability. And comparative studies with non-autistic populations showed the same sets of later outcomes for those who are not intellectually disabled and have early language deficits or delay. Language is an extraordinarily complex aspect of our brain. Language delay is not the key factor for diagnosis that people once thought it was. However, the criteria still require that the onset of symptoms manifested in early development even if they do not result in a diagnosis until later. (They may not be fully externally observable until a child is placed in a new environment like preschool.) I didn’t speak at all until I was 3 and then had issues with dropped syllables and substitutions, so had I been diagnosed under DSM-IV, I would have been excluded from an Asperger’s Diagnosis, which is what most people I’ve told assume would have been my diagnosis. (My therapist actually pointed that out to me, though I had already noticed it.) I still have some stereotyped use of language (including immediate and delayed echolalia) and I sometimes “lose my words” though I quickly mastered ways to disguise, cover, hide, and mask both of those. I have a common autistic gap (30 points) between verbal and spacial intelligence, but verbal intelligence is my strength. It’s hard to predict later outcomes from early development and that’s even harder with autistic children and even further complicated by the fact that about 40% of us are also intellectually disabled, which adds its own set of challenges. We are also more likely than the general population to have epilepsy, ADHD, hypermobility related issues, and a list of other things. It makes isolating things specifically related to autism in studies … challenging. Your son may or may not ever become verbal. I’ve found nothing that predicts that outcome. You may want to read “The Reason I Jump” by Naoki Higashida, a thirteen year old non-verbal autistic boy.

    2. The answer boils down to changing diagnostic criteria as we learn about and better understand autism. It basically didn’t exist as a diagnosis when I was a child, The word ‘autistic’ was only mentioned in relation to childhood schizophrenia. I’m sure you have the DSM-V diagnostic criteria. Here’s someone who consolidated all the other criteria in a single post so you can see how the diagnosis has evolved.

    http://www.unstrange.com/dsm1.html

    The criteria today are well-supported by current research but as we learn more they will likely evolve further. Autistic people have always been around. We just didn’t have a name for it until recently. “Neurotribes” starts with character studies of likely autistic individuals from history. It’s worth reading as well. Most of the rest is hype, scare tactics, and often a way to make money off a perceived vulnerable population.

    3. As far as I can tell, we don’t really know how the different things are connected, though they are. OCD is one of the ones autistic people are also more likely to have than the general population. As noted in a comment above, “pointing” is not as obvious as people often assume. At that age, the best I could offer is to continue to work to understand how he’s communicating and do the things he does or to which he responds.

    4. There’s a fair degree of consistency. Some are better than others. The response by Julian’s doctor was reasonable. There’s no credible research supporting any of those theories. Autism is neurodevelopmental. Our brains developed and function differently than yours. Ongoing fMRI research continues to illustrate that reality even though we’re still trying to understand all the ways our brains are different.

    5. Self-stimulation (stereotyped or repetitive acts, use of objects, or language) is not really a specifically autistic thing. In fact, everyone does it. Think of people twirling their hair, tapping their fingers, chewing on a pen, and a host of other things. Those are all self-stimulatory behaviors. Human brains seem to need it. The question is really why autistic brains need so much more, more exaggerated, and more frequent stimulation. It’s not that we do these things, it’s that we do them to an extent and in manners that strike non-autistic people as unusual. (Or we learn to suppress and hide them and let the energy out in less visible and obviously “weird” ways.) A lot of that is probably related to the way we process sensory input, which is much less filtered for us than for non-autistic people and can be overwhelming. We have more energy we have to release. The note in a comment above about some of us having less sense of pain is one I hadn’t encountered, but makes sense. Notably, I had a twisted colon this past summer that came close to rupturing. But the only symptoms I had were a persistent fever with no apparent cause and an overall sense of discomfort. A free-standing ER doctor I went to on the weekend when the fever still hadn’t left noticed my distended abdomen in a chest x-ray and did a CT scan which identified it. Nobody could believe I wasn’t incapacitated by pain. I’ve also often hit my head against things when alone and trying to think or work through something. I never broke the skin or left bruises, so I just thought of it as trying to shake things loose mentally, not as self-harm. After all, it never hurt. If anything it helped me feel better.

    I’ll add that while they now think autism is 83% genetic, their are multiple linked genes and gene sequences from different parts of the genome. And any given individual will have variations in at least three of those many different identified areas, but not the same three. So it’s heavily genetic, but it’s a complex expression spread across swaths of the genome. Other studies have found it linked to the genomic expression we believe allowed increased cognition in human beings. It may just be that some of us having autistic expressions of those genes is linked to their existence. And even identical twins don’t have identical genomes. Something that’s heavily genetic is more likely to also occur in a twin than even in another sibling, but it’s not a given. It’s just more likely.

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    1. Thank you for your in-depth insights. I appreciate when people take their time to explain this complex condition to me. I wasn’t aware that identical twins didn’t have identical genomes. I only know a little about genome sequences, but it is very interesting. ❤

      Liked by 1 person

      1. Yeah, they start from a pretty close to identical base with the initial zygote split, but then epigenetic factors during development and even pure randomness will send some things down a different path so by the time they are born, there’s significant variation. And it varies with sets of identical twins. Genetically, some are more “identical” than others. All are obviously more alike than any two non-identical twin people. My father and aunt (his sister) are both geneticists. He was a cancer researcher and she did various things but spent the large latter segment of her career teaching anatomy to medical students. My understanding is still very much from a lay perspective and I likely mischaracterize things at times, but I’ve heard discussions on genetics for most of my life. You can’t help but pick up some things. 🙂

        Liked by 1 person

      2. I searched to see if I could find a decent popular article (as opposed to scientific paper) describing the current state of knowledge. We always knew there was variation in gene expression. Then we learned about epigenetic triggers actually flipping genes ‘on’. And then delving into the genome itself (only possible once we were able to map it) we discovered that DNA itself isn’t identical with identical twins. Much closer than for anyone else, but not 100% the same. Knowledge keeps evolving as we learn more and more. And we’re doing so at a rapidly increasing rate.

        https://mobile.nytimes.com/2008/03/11/health/11real.html?referer=https://www.google.com/

        Liked by 1 person

  6. What a great response!! And it’s wonderful to hear from another person diagnosed later in life. My oldest son was diagnosed at about 30. No surprise to me, but he never met the criteria before the DSM-V.
    I think we all know people who would benefit from assessment as adults. 🙂

    Liked by 1 person

  7. I know there’s always more information than any one person can absorb and most of your attention, energy, and focus is devoted to the immediate, essential task of actually caring for your family. So I apologize in advance if I’m “dumping” to much information.

    But I was just reading something that made me think of your question about your twins. I believe you wrote elsewhere that Dominic, though verbal and not autistic, has language delays. This article delves into fMRI studies of brain function comparing nonverbal autistic children to autistic children with more typical language skills, non-autistic children with language delay, and typically developing children. It was a study focused on “baby sibs” but the results may have broader implications.

    https://spectrumnews.org/news/brain-behavior-distinguish-autism-language-delay/

    A notable finding was that brain scans of nonverbal autistic children were most similar to those of autistic children with typical language development and were unlike the scans of non-autistic children with language delay. That points to something other than typical language delay going on with nonverbal autistic children. I ferret out such things mostly to try to understand myself better. Even though autism didn’t exist as a diagnosis back then, I was one of those autistic children with clinically significant language delay and though I’ve learned to mask and hide it very well, I still sometimes have selective mutism. So it’s directly relevant to me. But as I read it, I thought of your description of your twins and the questions you had asked and though I would share.

    It’s more just the bare beginning of a possible answer than anything else, but perhaps it’s helpful anyway.

    Liked by 1 person

    1. Thank you for thinking of me. I rarely have the time to research autism and other disorders the way I would like. I also have 2 older kids. (That makes 4.)

      So it is very helpful when people send me new studies and findings that they feel are noteworthy. My mom does it all the time.

      That is very interesting. I wish I could get my kiddos’ brains scanned without traumatizing them. I took part in a 2 day sibling study at NIH with my brother who has schizophrenia. We did fMRIs so they could compare them.

      I want to do everything I can to help them reach their full potential, whatever that may be. So thanks again, and feel free to send any more info my way. ❤

      Liked by 1 person

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