Advice to parents after an autism diagnosis

Parents occasionally write to tell me their child was just diagnosed with autism, and in searching the Web for insights they found my blog. They often express fear and sometimes sorrow, and ask if I have any advice.

Since this has happened more than a few times, I thought I'd compile some of the thoughts I've shared with these parents over the past few years into one list, in no particular order:

• An autism diagnosis is just a label; nothing about your child has changed. The upside of the diagnosis, on the other hand, is that it allows your child to get critical services and support.
• It might feel unfair that your child was diagnosed with autism at such a young age, but remember that early intervention is critical — and the earlier, the better.
• Try not to panic, or feel like you have to fix things right away. This is a lifelong journey, and progress will happen over time just as it does for any child.
• Though some people feel ashamed of their child's autism, this is one of the most damaging things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.
• Although it's not uncommon to want to find someone to blame, don't do it. No one is to blame. In particular, don't blame your partner. You need to support one another now more than ever.
• Autism is diagnosed by a cluster of similar symptoms, but no two people with autism are alike. Evidence-based treatments involve working on specific challenges, not eradicating autism. Try to move beyond the label and focus on your child's unique challenges and, more importantly, strengths.
• Beware of anyone offering a cure or recovery; there is no scientific basis for any of these so-called remedies, and some of them are downright dangerous. They are offered by people who — as kind, supportive and legitimate as they may seem — are either grossly misinformed or simply want your money.
• Don't buy into the myth that people with autism are "locked away" or otherwise disconnected. Outward appearances can be deceptive; if you truly want to get to know your child, you'll find they're just as present as any other child. Seek out their interests and make them part of your play routine.
• Embrace — don't extinguish — the obsessions. They provide a great way to connect with what interests your child.
• Presume competence. Your child will amaze you with their abilities if you don't assume they're incompetent. In fact, nudge them (with love and patience) — just as you would any child — to do challenging things, things that may push their limits. This is how all people grow regardless of their neurology.
• Embrace the atypical. We like to say that we value diversity and individuality, but when it comes right down to it, there's an overwhelming parental urge to make sure your child "fits in." Over time, you'll come to understand that fitting in is a lot less important than being happy.
• Some friends and family will evaporate. There's no single reason why this happens, but some of the people you think you can rely on most simply won't be there. Try not to waste your time and energy fretting over it. New, wonderful people will enter your lives, and some of the old ones may eventually get with the program as well.
• Try to get to know teens and adults who have autism. Read their blogs and books, watch their videos, connect with them in person. They will help you gain insights you cannot possibly imagine now.
• Parenting will not be what you imagined; it will be harder than you'd hoped. Try to let go of your expectations and live in the present. In time you may come to find great purpose in this experience. I personally cannot imagine my life, or my son, without autism.

Most of all, remember that your love and acceptance for your child is what matters most.

If you like this, please consider sharing it with others. Thank you for reading.

What I've been reading - October 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. Warning: there's more than usual!

Oh, also, if you like this and find it helpful, please share with others. Thanks!

Opinions and insights

17 Wishes From an Adult With Autism. All great, but my favorite is number 13: "I wish for those who are on the spectrum and for those who love someone on the spectrum that you know we’re moving forward every single day." Read more

Diagnosis Day: Parent voices and the autism spectrum. From the always awesome Invisible Strings blog, parents share their advice for newbies to the world of autism parenting. Read part 1 and part 2

Stimming is not just a coping mechanism. "Stimming is a positive part of autistic experience, not an unfortunate-but-functionally-important thing we have to do." I love this. Read more

Active Acceptance: Why Does It Matter? "When you refuse to accept your child for who they are, when you care more about your child acting 'normal' than about your child’s health and well-being, when you subject your child to trauma inducing therapies in a futile effort to change their neurotype, when you fall for the lie that says that there is a 'normal kid' inside your child under the Autism and if you just fight hard enough you can 'rescue' them—when you fight against Autism, all you’re really doing is fighting against your child." Yes. Read more

These Are My 3 A's of Autism. Good advice. Read more

Neurodiversity: Some Basic Terms & Definitions. "Has autism" or "autistic"? A helpful guide. Read more

in common. Great post. "...if we dismiss the voices of the people who happen to have words to describe what our kids don’t yet (simply because they have words to describe it), we toss the greatest resource we have into the wind." Read more

Dr. Jonine Biesman: Avoiding Crises Through Respectful Parenting. "We talked with Dr. Biesman about best practices for parents who need help understanding and parenting kids with aggressive or self-injurious behaviors, about presuming competence in children who need communication support, and about the potentially dangerous costs of parent-enforced compliance" Read more

Truth and Consequences – The Anti-Vaccination Movement Exacts a Price. The lengths one mom will go to cure her son, trusting strangers on the Internet rather than credentialed professionals. She quite literally turned her child into a human guinea pig for every new fad treatment she came across. "The 'treatments' inflicted on Saul are very painful to read. Mary joined numerous autism 'biomedical treatment' yahoo groups. She is presently a member of all the groups in the box, see below, and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing 'gross medical misjudgment.'" This is sickening and frustrating, and all-too-common. Read more

Study: You Can't Change an Anti-Vaxxer's Mind It's so tiresome to have to keep going over the thoroughly debunked myth that vaccines cause autism, but the reason we have to go over it is because the message just isn't getting through. In fact, as a recent study notes, talking about it might actually be backfiring, and policy changes might be more effective. Read more

Science

Autism symptoms occur independently in general population. The more I've learned about autism, the more it seems like the symptoms we associate with it are actually just more intense, more clustered attributes we all share. Nice to see the science is beginning to support this notion. Read more

Scientists Implicate More Than 100 Genes In Causing Autism. This could be big. Why? Michael Ronemus, a researcher at Cold Spring Harbor Laboratory, quoted from the article: "If we have better genetic screening when a child is diagnosed with autism, we might be able to say here is the behavioral intervention they need. We already know that if you intervene early on, you can produce a more optimal outcome. Read more

Massive sequencing studies reveal key autism genes. Another biggie: "Analyzing the sequences of more than 20,000 people, researchers have unearthed the largest and most robust list of autism genes so far, they reported today in Nature." Moreover, "The two lists (of genes) share only ten genes, but overall the genes point to two key functions: communication between neuronal junctions, or synapses, and control of gene structure and expression. The latter, virtually unheard of in autism five years ago, is emerging as the strongest pathway involved in the disorder." (Emphasis mine) Read more

There is No 'Healthy' Microbiome. Not an autism article, but of interest to anyone pursuing a so-called "healthy gut microbiome," including those pursuing biomed treatments for autism. Read more

A Brain-Training Update. We've all seen those online ads for "brain training," or ways to make your brain healthier through online tests, games, etc. There's a lot of hype, not a lot of science, and so this article might be of interest who are looking into such things to help with autism. Basically, anything you do that involves "working" your brain is as good as these tools, so save your money. Or, as the author puts it, "Just do something, do lots of things, and keep it fun and convenient." Read more

Method reveals thin insulation on neurons in autism brains. More on neurons and myelin. Fascinating stuff. Read more

News

'Too many suffer in silence': Why we urgently need to talk about autism and girls. If you read as much about autism as I do, it's easy to think it affects boys almost exclusively. And then you see that, in reality, it doesn't. This is something that need to change. Read more

'Mother warrior lied over MMR 'vaccine injury.' File this under unprecedented, unexpected, and fascinating. "An English judge has ruled that a leading campaigner for disgraced former doctor Andrew Wakefield concocted claims of damage from immunization." For example, "She also now complained that - from the time of his vaccination - 'M' had suffered from 'autistic enterocolitis.' This is a novel condition, not accepted by medical opinion, masterfully discovered by Wakefield for the (long-since-failed) lawsuit, that cost the taxpayer £26.2 million in payments to lawyers and doctors, of which he got more than £435,000. For ten years, the boy suffered a 'severe gut disorder,' 'E' said, although nowhere could the court find any record of such a problem, and the Royal Free only noted constipation." Read part 1 and part 2

Jude Mirra’s mother takes the stand in murder case The tragic and infuriating murder of a young boy with autism unfolds in a courtroom, but there is a lesson here, if we choose to heed it. "How much did the false hope sold by charlatans play into this murder? We may never know. Jude died in 2010 at age 8. He grew up during the height of the 'better dead than autistic' rhetoric." In other words, telling someone (as we were once told by a so-called DAN! doctor) that their child can be autism-free is not only misleading, it could lead to a sense of failure that results in tragedy. Read more

Mother who tried to kill her autistic daughter sentenced: 10 to 22 years. "We can have the discussion of how difficult it is to be a parent. How difficult it is to be the parent of a disabled child. That conversation must start with the challenges and needs of the child. And what greater responsibility do we have than to protect our children’s lives?" Read more

What I’ve been reading – September 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring.

Tip

The Underwear Rule. Due to their vulnerability, children with disabilities including autism are three times more likely to be victims of sexual abuse. The Underwear Rule is a set of five easy-to-remember tips for parents and children to help prevent such abuse. Read more

Science

Autism Prevalence Unchanged in 20 Years. We keep hearing about an epidemic, and I keep saying, "there is no epidemic." Nice to see in-depth, large-scale research supports my contention. As the author notes, "This latest study showing a stable autism prevalence between 1990 and 2010 is in line with a consilience of scientific evidence showing that autism is mostly genetic, has its onset prenataly, and that the apparent increase in prevalence is largely due to diagnostic substitution, increased surveillance, greater acceptance, and broadening of the diagnostic criteria." Read more

Brains of children with autism teem with surplus synapses. There is a some debate on this topic, but a few post-mortem studies seem to confirm that in at least some autism cases, there is a statistically significant surplus in synapses. In this particular study, "Sulzer and his colleagues began by examining postmortem brain tissue from 20 children, half of whom had been diagnosed with an autism spectrum disorder. In line with other studies, they found that the brains of children and adolescents with autism have a higher density of dendritic spines than controls do." (Note: some biomed folks will tell you it's a case of inflammation not surplus, but this is a distortion of the actual science.) Read more

10 Weirdest Things Linked To Autism. A list of bizarre things people once thought caused autism (and in some cases, still do). Read more

Are Children with Autism Better at Math? Although fMRI studies can be problematic, and this is a small study, early indicators suggest enhanced math skills in some people with autism may be due to brain wiring. “Our findings suggest that altered patterns of brain organization in areas typically devoted to face processing may underlie the ability of children with autism to develop specialized skills in numerical problem solving.” Read more

Opinions and insights

Imaginings – an insight in to my autistic mind. An autist describes the "movies" he creates in his mind, and ends with this wisdom: "Overall what I think this shows is that any autistic behaviour will have a meaning, and a purpose behind it — no matter how it might look to neuro-typical people.  Everybody has behaviours – they are part of the human condition – and often these can be incredibly beneficial to the person involved.  In the case of people who have autism, unless the person is hurting themselves or somebody else, they should just be left to get on with them – you never know what benefits they might bring." Read more

Amplify This: "Don't Murder Your Autistic Kids. Raising a child with any disability is hard, but it's not an excuse for murder. Nonetheless, the media often seem more sympathetic toward the parent who murders their child than they are toward the actual child. "Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't." Read more

What neurodiversity isn't. I love this piece so much. "Neurodiversity means changing the definition of success. It means prizing self-actualization over self-camouflage. It means accepting how integral autism is to one’s identity, one’s understanding of themselves and the world around them. Autism is a Pervasive development disorder — embracing it means understanding that there is no aspect of life that it does not touch. It is the filter through which one experiences and interacts with the world." Read more

Why I Don’t Care What Causes Autism. Because I'm fascinated by the science of autism (and the brain in general), I'm still very interested in how it comes to be. Nonetheless, like the author of this piece, I find many parents (especially with a newly diagnosed kid) can get swallowed up asking "why?" I get it, I was there, too. But now that I'm less worried about why, I'm a lot happier. Read more

Dear "Autism Parents." An adult autistic has some strong and insightful words of advice for parents of autistic children. Read more

This Is My Definition of Autism. A simple, almost poetic definition of autism. Read more

Autism, Parenting, and the Importance of Attitude. I have not always had a positive attitude in life, but somewhat ironically, all the health and developmental issues that have happened to my sons have actually made me a more grateful, reflective person. As Shannon Des Roches Rosa writes in this wonderful piece, "While all parents, of autistic children or otherwise, deserve the right to vent lest our heads and eyeballs explode (and then who would clean that up?), when it comes to complaining, I hope we can try to be dabblers, not devotees. And that, if things really do get too hard to bear, we can rely on communities secured by hard-won optimism to envelop us and hold us aloft, until we have the strength to strike out on our own again." Read more

News

Drexel's autism institute gets $3.6M gift. Nice. "Drexel University’s A.J. Drexel Autism Institute has received a $3.6 million grant from an anonymous donor. The money will be used by the institute’s life course outcomes research program for a series of initiatives focused on understanding and improving quality of life issues for people, at all ages, on the autism spectrum." Read more

What I’ve been reading – August 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Opinions and insights

The Problem With Functioning Labels An excellent post detailing the fundamental flaws with functioning labels. "High and low functioning labels are at best pointless and at worst costly red herrings distracting us from what’s important... acknowledging that every autistic person is an individual with their own set of strengths and challenges, and getting them the support they need to deal with both." Read more

The Seduction of "Recovery" The opening line sums it up: "Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of 'recovery.'" A thoughtful exposition on the folly of seeking recovery for a child with autism. Read more

An Open Letter to Richard Dawkins Dawkins recently tweeted that the moral thing to do would be to terminate a pregnancy if it was determined the child had Downs Syndrome. Ido in Autismland responds: "I am sure my family has struggled because of my disability. I have too, more than you can understand, but despite my disability, I am sure my life is purposeful and I hope I am making this world a little better." Read more

Resources

My Child / All About Me Handbooks: Every child with Autism is different With school starting soon (or now!), I found this helpful handbook that parents can download and fill out with details about their child. The goal is to help teachers understand the unique characteristics of each of their incoming students. Read more

Science

Guest blog: London as a crucible for autism in the 1950s An absolutely fascinating look into the history of autism diagnosis, where a few dedicated researchers changed the course of autism history forever. (Note: add this to the pile of research contradicting the claim that autism is a new phenomenon.) Read more

The Nine Points Related to the article above, here are The Nine Points Mildred Creak and her working group helped establish as a preliminary but common and fundamental set of criteria for an autism diagnosis. It's a testament to the quality of the work that these Nine Points are so close to what is used today as diagnostic criteria. Read more

Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities That whole CDC whistleblower story that got the antivax crowd in a lather? Bogus from top to bottom with a lot of shady doings by, yes, Andrew Wakefield and Brian Hooker. Too much to write here, but this is an excellent recap. Read more

Oxytocin Isn't Lacking In Children With Autism, Researchers Say You may have heard that Oxytocin could be critical in helping people with autism. This large-scale study indicates that it doesn't look like the panacea some hoped for: "'Our data blew that out of the water,' says Karen Parker, a Stanford researcher involved in the most rigorous study yet of autism and oxytocin levels." Read more

Since bleach wasn’t enough, let’s start adding hydrochloric acid to MMS? The incredibly dangerous biomed treatment, Miracle Mineral Solution, is back with a new brand and formulation. Catering to the "cure" crowd, this snakeoil promises to clean the toxins that cause autism. As this article notes, parents who use MMS even post "pictures of the intestinal linings of their disabled kids, passed with the help of MMS enemas. They caption these pictures with statements about how MMS killed 'worms.'" Sadly, MMS is popular enough to be sold at the annual Autism One conference run by Jenny McCarthy's autism pseudoscience organization, Generation Rescue. Read more

What I’ve been reading – July 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Parenting

How I Learned to Accept My Son’s Quirky Obsession. I've written in the past about how C's obsessions often end up being a great way to connect with him, despite the fact that some professionals warn against encouraging them. After trying to stem his son's obsession with Sesame Street, this ASD dad now accepts and encourages it. Besides creating a deeper bond, he and his son now have entirely new ways to engage and play. Read more

Why I Best Remember This Moment. File this under important to remember. The mother of a girl with Down syndrome weighs the good against the bad. "Then I have to remember that the bad is just life. The bad moments have a purpose. The bad make the good that much better." Read more

Parenting an Autistic Child. The autism journey is framed as one of tragedy and heartbreak, where the child (with autism) is the cause of all that suffering. But what is the effect of that message on the child? "The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem." As my views on autism evolve, posts like this help me see a new way forward. Read more

Opinions

Stop Using my Children to Scare Parents out of Vaccinating. This post pretty much sums up my opinion of the anti-vaccination movement, particularly in terms of how they view autism and children like my son. As the author writes, "Vaccines are blamed for everything from common skin rashes to the Sandy Hook school shooting. But the big thing, every time on every group or thread, is autism. Autism is a scourge. Autism is a tragedy. Autism is taking our children away. My autistic child is damaged, I was told, and vaccines are to blame. The more I read, the angrier I became...As an autism parent, it offends me my children’s condition is being used to scare people away from life-saving medicine. I don’t want that to happen. It angers me that there are people out there who truly think my children and others like them would be better off dead than just a little different." Read more

Science

New Study: Most genetic risk for autism resides with common variation. A fascinating, important, large-scale study published in a well-respected science journal, the result of which is the identification of a series of genes that are likely involved in autism (not one single 'magic bullet' gene, as has been speculated). Moreover these genes are very common in the general population, but when occurring in significant enough numbers in any given individual, increase the risk of autism. Read more

No, autism in Scandinavia isn’t rare and “high functioning” A common trope among the anti-vaccination crowd is that autism barely exists in Scandinavian countries. A large-scale study debunks that myth. Read more