Let’s Celebrate Autism Acceptance Month!

April is Autism Acceptance month, and now– as always– acceptance (not “cure,” fear, burden, puzzle pieces, or “light it up blue”) is the message I’ll promote in my Parents.com blogs and elsewhere.

To that end, I had 2 blogs publish yesterday:

In the first,“This is What Autism Acceptance looks like: 21 Kids from Around the World,” I talked to families from all over the world, and parents and autistic kids shared positive messages about autism.

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From the post:
“April is Autism Awareness Month, now more commonly being called Autism Acceptance Month, when those with the disorder and their families and friends promote inclusion and work to change the dialogue from one of fear and pity to that of support and empowerment. Here are the stories of 21 autistic kids from around the world who might shift your perspective.”

Click here to read the full post at Parents.com

I also wrote about Rhema, a non-verbal autistic girl who uses RPM to communicate. I love this video of her telling her mom what she prays for, and it was lovely to talk with her mom about RPM and how Rhema’s “exceeding expectations” (in her own words).

From the post, “See this Non-Verbal Autistic Girl Tell Her Mother What She Prays For”:

“Autism acceptance begins by listening to autistic people. This is especially true with non-verbal autistic kids, since, for too long, it’s been assumed that non-verbal kids aren’t taking in what they hear, not learning, don’t want to communicate, and don’t have much to say. That assumption is utterly wrong— as non-verbal autistic bloggers Philip and Emma have shown and as I’ve seen in my own son, a non-verbal 7-year-old who, like Philip and Emma, uses theRapid Prompting method (RPM) to tell us his thoughts, wants, and feelings. Today, I’d like to introduce you to Rhema, another amazing non-verbal autistic child who’s using RPM to express herself.

Rhema’s mom, Jeneil, has been writing about her for many years on the blog Rhema’s Hope, and I caught up with her via email after I saw this beautiful video of Rhema using RPM to tell her mom what she prays for. Watch it—it will change the way you see autism forever.”

Read the full post at Parents.com


What I Wish I’d Know when My Son Got an Autism Diagnosis

This full post is on Parents.com:

15 Things I Wish I’d Known When My Son Got an Autism Diagnosis

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Autism surprised me five years ago, and it continues to surprise me today. Over the years, I’ve written this sentence so many times: “On my 32nd birthday, my son got an autism diagnosis…”

And although I still remember almost everything about that morning, today, on the five-year anniversary of my son’s diagnosis and my 37th birthday, I wish I could go back in time and tell myself these things:

You’re not “going to a funeral.”

As I wrote five years ago, when we walked into the doctor’s office to get my son’s diagnosis, I said to my husband, “I feel like I’m going to a funeral.” I realize now how melodramatic and wrong-headed that statement was—my son wasn’t dying, and the grief I felt would have been mitigated had I known more about neurodiversity or had I met the wonderful autistic adults I know now.

Don’t forget to hope.

In the early days after my son’s diagnosis, I despaired. There were so many people telling me my son was broken, I lost my way. Eventually, hope replaced fear, but I wish I could tell myself that my child moving along a different developmental trajectory is not a reason to lose hope.

Things will be harder than you expect, and there will be more joy than you can imagine.

The last five years have had some very rough spots, but they’ve also been filled with more joy than I ever expected. I’d like to tell my younger self that yes, there will be hard days, but you will be constantly surrounded by laughter, snuggles, and joy from both your children.

Autism means a different neurology, not a broken one.

Why didn’t someone tell me this sooner? Autistic adults and other writers are certainly trying to share the message that our kids are different, not damaged. They don’t need a cure, they need support. Knowing this on diagnosis day would have changed so much for me.

Your boy will laugh, love, connect, and grow—all in his own time.

The first prognosis seemed so grim: severe autism, probably will never communicate or show affection. Likewise checklists showing his “developmental age” were just dreary. I want to tell my younger self—don’t believe these! Believe in your child. Nurture his potential, follow his interests. If he loves something—like stimming or spinning or watching Elmo—let him enjoy it. He will be a happier child if you do.

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He will communicate.

When my son stopped talking, I thought that meant he would never communicate. I was so very wrong about this, as his use of RPM and other communication methods have shown us he’s got a lot going on in his mind that he wants to tell us.

More here: http://www.parents.com/health/special-needs-now/15-things-i-wish-id-known-when-my-son-got-an-autism-diagnosis/


We Cannot Dismiss Some Bodies as “Inconvenient…”

You can read this full blog at Parents.com:

No! Parents of Kids with Severe Disabilities Should Not Be Able to Stop Their Growth

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A few days ago, the New York Times ran a story called, “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?” This provocative headline refers to a medical procedure that uses estrogen therapy to stunt the growth of kids with severe disabilities. While employing this “therapy,” doctors have also performed surgeries on some of the children to remove their uteruses (so they would never get a period), breast buds, and other “adult” parts. The reaction to news of these procedures and the NYTstory has been swift.

On one side of the debate, disability advocates like Alice Wong—who wrote a fantastic Twitter Storify sharing her opinions—cuts to the heart of the matter, saying things like: “Caregiving is difficult, no doubt. What about additional state services & supports? Where’s the broader context?” or “Why does the child have to change their body (w/o consent) to make life easier for their parents? There are many non-verbal & developmentally disabled people who are aware but cannot object or give consent.”

In a similar matter, Ingrid Tischer from the blog Tales From the Crip wrote a scathing indictment of substituting an unnecessary medical procedure for funding of in-home services and support. She answers the question of ‘Why would we even consider a procedure like this?’ with deeply satirical and bitingly poignant replies:

  • “Because it’s so much safer to be a physically immature person than a physically mature person when it comes to abuse and other forms of violence.
  • Because what’s the big deal if you’re not even going to use your uterus?
  • Because why would an adult caregiver consent to an experimental treatment to, say, increase their physical strength, instead?”

One the other side of the debate are parents of kids with severe disabilities, many of whom have considered getting this procedure and who are angry at those who judge them. I talked to several parents via social media who mentioned the hardships of caring for a large child with severe disabilities. Underneath their frustration was a very strong sense of not having enough help, and desperately wanting to do what was best for their child by continuing to keep him or her at home. Without adequate and affordable support, however, they found themselves contemplating and justifying choices like stunting their child’s growth.

And while all of this has given me pause, it’s not changed my initial gut reaction—which is one of horror—at the thought of a parent or anyone else manipulating a child’s body for their own convenience….


Read the full post here: http://www.parents.com/health/special-needs-now/no-parents-of-kids-with-severe-disabilities-should-not-be-able-to-stop/


4 Tips for Teaching Life Skills at Home

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This post first appeared on Parents.com

Skills of daily living— like doing laundry, food prep and cooking, and self-care, to name a few— were things my 7-year-old autistic sonworked on for years in therapy. Despite the fact that he had rigorous programming with multiple steps for everything from how to wash his hands to how to prepare an apple for a snack, his gains were fairly slow. I think a large part of this was due to the rigid structure of the tasks—for example, he might miss a step, have to redo that step, and then grow frustrated at having to backtrack.

It was not until we took a year off therapy (through a series of unexpected life events), that we really started to see his interest in taking care of himself and his home increase dramatically. Here’s how we did it, and I think the same steps will help any child with special needs grow better at daily living skills.

Follow his or her interests.

My son has always loved coffee. Since he was a toddler, he’s stolen sips of my husband’s and my coffee, and he loves the smell and feel of unground beans. Slowly, this interest evolved into a desire to help with our morning coffee making. Now, every morning, he fills a pot with water and carries it to the stove. Then he helps me measure beans; we grind them together; we put them in the French press…and so on until the coffee is ready.

One reason I think he loves this ritual so much is because he’s genuinely interested in the smell, feel, touch, and taste of coffee. Following this interest has allowed us to practice many life skills—not that making coffee is something everyone needs to know, but measuring, following instructions, and other parts of the process translate across contexts.

Expand slowly—don’t push.

It’s important to have high expectations for kids with special needs, but it’s also important to let them develop in their own time. This is as true with teaching life skills as it is with everything else. So, certainly, it’s great to start something like potty training or teaching a child to brush his or her teeth at age 3, but realize that the child will do the skill independently when she or he is ready. That may take months or years. Be patient, and expand her life skills slowly.

Teach your child small skills—washing his hair, using a washcloth—and then add on to these over time. Patience wins the race here because it will save you and your child a lot of heartache and frustration.

Make it meaningul work.

One thing that we’ve found to be really important is to make the work my son does more than just busy work. We don’t practice sweeping, we actually sweep up messes. We don’t sort using sorting toys, we sort laundry. We don’t play with fake food, we actually make sandwiches. My son is quite literal-minded, so things like fake food were always frustrating, but the larger skill he was meant to learn—how to make a peanut butter and jelly sandwich, for instance—has always interested him. So, that’s the kind of work we do at home.

Give independent tasks eventually.

As he gets more comfortable with each skill, I slowly give my son more responsibility and independence. Instead of holding his hand while he loads the dishwasher, I now let him do it, one glass at a time. Because this is an organic move towards independence, rather than a forced march, we’ve even seen a lot of non-prompted, self-initiated skills in action. For example, if my son spills a glass of water, he grabs a rag to clean it up. Likewise, if he sees me doing laundry, he rushes over to help.

By following my son’s interests, working at his pace, giving him meaningful work, and allowing for independence, we’re saying to him: You can do this; the work you do matters to the running of our household; and you are an important member of our family.

Practicing daily living skills at home doesn’t have to be a chore (even when you’re doing chores!)— and it can be a great way to build a child with special need’s self-esteem, prepare him or her for future independent living, and make your household run more smoothly. Wins on all fronts!


Thoughts from an Autistic Parent Part 3: Ally Grace

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I got my autism diagnosis as an adult. I struggled a lot as a child and autism made so much sense when I read up in it. My 4 children have also been diagnosed with autism and my partner identifies as autistic. So, we are one happy autistic family. It is pretty wonderful to be living in this way with one another. We are an unschooling family. My children have never been to school at all. What this means for us is that my children have freedom to learn and live and be in the ways that suit them, and we are there (as parents) alongside them to help them with their pursuits and interests, and we provide opportunities that are non coerced. I have learned that this already radical notion is viewed as even more radical for autistic children. We already (as a society) don’t trust children to make good choices for themselves and tend to simply force them to follow the preferences of adults – and we trust autistic children even less. I think this is because we see them (socially speaking) as inherently in need of fixing, inherently damaged or incapable. So, it is really amazing for me to observe my kids in this kind of environment. It’s not often that autistic children are given that kind of life.

What are some of the challenges you face as an autistic parent?

The main challenges I face as an autistic parent are Internalized Ableism, and ableism from professionals who could yield power over me as a parent. Internalized Ableism for me, is having been treated as a damaged person and having grown up to believe that I was bad, that something was wrong with me. Of course, I know now that there is, and was, nothing wrong with me, I’m just autistic and function perfectly well as an autistic person. However, I believed for so long that there was something wrong with who I am, and I was treated that way since as early as my memory can go back to. And so there are a lot of lingering thoughts that follow me, and make me feel faulty when I act in autistic ways. This can get in the way of my life, because it is hard to feel shame for simple and automatic things that I do. Ableism from those in positions of power is a very big one too. Because I am a parent, people believing me incompetent or emotionally lacking, is dangerous in the sense that I could be assumed incapable of being a parent. And so, it feels very scary sometimes being an autistic parent, wondering whether one day my parenting will be seriously questioned due to discrimination and misunderstanding. I am always needing to choose between saying nothing so no one can discriminate, but then have my autistic ways misunderstood as something else (potentially something negative) and I am not able to then seek accommodations or support for being autistic – and disclosing that I am autistic, but then having people immediately suspicious that I am by default of being autistic, a poor parent. These are really nothing at all to do with autism itself and the way my brain works, but are all to do with perceptions and discriminatory attitudes toward autism.

What are some of the ways that being autistic helps you be a parent?

Well, I think that like all parents, my unique personal profile brings various benefits as well as challenges. For me, being autistic brings with it the ability to collate a lot of information in my memory. I am a great researcher, and I have loved to read since I learned how. I think that all the ways I parent my children, with the way I challenge that being autistic means innate deficit and the way I have challenged school education and also authoritative parenting methods – I think all of that was possible because of my ability to process lots of writing and lots of ideas. I am so grateful for that ability, and it has transformed the lives of my children. There is also the important fact that my children are autistic, and so having an autistic parent is very valuable. When I think of how Internalized Ableism feels, and when I remember how I was treated constantly as though there was something wrong with the very essence of me – these things really help me to steer away from those things, to help me to raise my children without passing on the shame that was given to me. I also think that being autistic has gifted me with the knowledge that you do not have to understand someone’s experiences or struggles to be compassionate and respectful, or to be a great parent. Autistics often grow up realizing that others don’t understand them, and getting mistreated as a result. But you shouldn’t need to understand to simply be kind, and I think my experience as being a part of a minority population of sorts, helped me to be a kind parent.

What do you want other parents to know about your family, yourself, or being an autistic parent?

I would love for other parents to question the common belief that being autistic means an inherent ‘something went wrong’, or ‘something is wrong’. That is so often the base assumption that underlies all further thought regarding autism and autistic people. Imagine a mindset where we DIDN’T think this way. This is how I live within my family unit every day, and the possibilities of this kind of acceptance are great to imagine. Often when I say this, people misunderstand and think I am expressing some kind of idea that life for my family and me is always perfect or ‘rainbows’ – but that isn’t what I am saying at all. Because we don’t view non-autistic people as inherently damaged, and we also don’t assume that means life is always perfect for them. The essence of what I invite by challenging the ‘something is wrong’ dialogue is to accept autistic people as a part of the diversity of human kind, without thinking being autistic means a kind of damage.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

Well, I think there is an assumed negative social vibe surrounding autism in itself – there is talk of pregnancy choices ‘causing’ autism, things like medications, vaccines, food, toxins. The language that describes autism is stuff like ‘epidemic’, ‘public health crisis’. It’s innately pathologised language; there is that base assumption that autistic people are damaged people and not capable of things we consider important – like love and emotions and connections to other people. So, really, to change the conversation involving autistic parents, we need to change the entire discourse surrounding autism. If we didn’t think autistic people were damaged, we wouldn’t t think anymore that they’d be poor parents would we? We’d simply see them the same way we see other parents. I also think that social assumptions about ‘good’ ways to connect and spend time play a part in this specific issue too. Because autistic parents may connect with their children in unique ways, and I believe that those ways should be respected. This does come down to respect for autism as an entity though.

What services might help autistic parents?

This is a tricky question, because of the power play regarding services for autistic parents. The possibility of having our children removed from our care, or of non-autistic people who don’t understand us interfering in the way we parent simply due to discrimination; is a big issue. So, I think any services would have to exist amidst a paradigm of neurodiversity, within a belief that being autistic is natural and okay and that doesn’t involve a need to be ‘fixed’. But one that also didn’t think that there were conditions to being accepted, and that support needs were perfectly okay. Like, while being accepted as our autistic selves, it’d need to be a full acceptance not just an acceptance when we seem ‘mostly normal’. I know that this support exists informally between autistic parents already – and I am involved in such networks already, mostly online – but formally, there would need to be a big thought shift in order for autistic parents to be supported respectfully. Especially autistic mothers, because I think autistic fathers in nuclear families have less expectations upon them socially (as fathers rather than mothers) and so being autistic as a father isn’t viewed with the same alarm that being an autistic mother can bring.

Is there anything else you’d like to add or share?

I think I would really love it if the experiences of autistic parents, and for me I am a parent raising autistic children also – I would love it if our experiences were allowed a niche. As it is, our experiences seem to be constantly lumped in with the experiences of non-autistic parents, and when that is the default assumption, we are going to be constantly seen as coming up short because we are so different in our approaches and ways. Among other autistic parents and among the experiences and stories of other autistic parents, I think our day-to-day lives would be able to exist much more strongly and would be able to be explained much more accurately.



Thoughts from an Autistic Parent Part 2: Melody Latimer

Meet Melody Latimer:


I’m the mother to 3 children and have been married coming up on 11 years. My older two boys are both autistic. My oldest was diagnosed in 2007, and my youngest and I were both diagnosed in 2008. While I had had my suspicions about being autistic, I actually received the diagnosis through an unlikely source. We were involved in a child services case that had been taken to court. Through a court ordered evaluation of the entire family, I received my diagnosis. While it was a relief, the diagnosis didn’t help much in terms of the actual court case. The child services case and court proceedings is actually what got me interested in advocacy, especially for disabled parents.


What are some of the challenges you face as an autistic parent?

Other than what I spoke about above, which we haven’t had any issues with since, my biggest challenges come around sensory overstimulation and a struggle with keeping up with household responsibilities. As a stay at home mom, the general expectation is that I’d do all the cooking, cleaning, grocery shopping, etc. Truth is, that’s not how our household is set up. When I get overwhelmed or anxious, I often need complete silence which can be hard with 3 kids, no matter their neurology. Luckily my husband is very accommodating and is happy to take over parenting duties when he gets home if I need a break.


What are some of the ways that being autistic helps you be a parent?

I tend to be highly observant of my surroundings. So when the kids are around, I can often anticipate their needs before they request them. While that’s not something my older two appreciate, my 18 mo old daughter seems grateful. As well, when it comes to parenting autistic kids, it makes it easier to understand where they’re coming from. I often use my experiences to talk to them as well as their teachers and therapists.



What do you want other parents to know about your family, yourself, or being an autistic parent?

Honestly, a friend of mine put it best. “I don’t see you as an autistic parent, but as a friend, who has has autism and happens to have kids.” This isn’t the same as person-first junk, but an understanding that I’m a parent much like any other. I’m trying to parent my kids and adult to the best of my ability. Ability and energy are a constant struggle. I put as much as I can into taking care of my children first. Then followed by taking care of myself. Then finally taking care of everything else. Their care and safety are the most important thing to me. As they get older and can do more for themselves, I find I have more time for all the things I really struggled with.



I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

I think more needs to be done to show how autistic parents actually parent. Not just anecdotal stories, but actually do some case studies on families. That just hasn’t happened. With the majority of actual literature out there says we’re innately negligent, that is what services providers are going to perpetuate. The other thing I would love is for more autistic parents to come out to tell their story. I tried several years ago to create a website to have those stories told. In the end, it was a struggle to get most autistic parents to blog about their experiences. I have continued to use the site, but mainly to talk about my family.



What services might help autistic parents?

I really think home cleaning services, professional organizers and possibly during newborn days a night doula or nanny. While I know many parents could use all of these things, when you’re talking about finite amounts of energy to exhaust, things that can be outsourced can make a lot of difference.



Is there anything else you’d like to add or share?

I think one of the things really missing from both the parent autism community and the autistic community is a place for autistic parents. We’re kind of scattered to the wind. There are a few places here and there where you can find other autistic parents, but those places are usually well hidden for fear of discrimination. While the discrimination won’t change, I feel like there should be more safe places for autistic parents, whether in local communities or online. I can only imagine how much easier this article would be to write if you had a place to start from rather than going to a non-autistic parent to find participants.



Thoughts from an Autistic Parent Part 1: Carol Greenburg

Meet Carol Greenburg:

I got my diagnosis of Asperger’s syndrome when I was 44 years old, about two years after my son was diagnosed with ASD at 31/2. I never had any kind of speech delay, but my speech pattern has always been mannered. I was consistently bullied during my childhood, by other children and occasionally even by adults. for using “big words.” By contrast, spoken language is my son’s most obvious challenge, though it is clear to most people who know him that he understands almost everything said to him. Presuming competence and comprehension is a good plan for communicating with all autistics, but I think it is particularly important in dealing with my son. His problem-solving skills are impressive so he almost always finds a way to get across his meaning, with or without spoken or written words. This year, if he is willing, I’m hoping he and I can work together on learning to use AAC (Assistive Augmentative Communication) technology. Although his speech and writing improves daily, I want to respect all avenues he might need to communicate even more fully. For my part, like most autistics the slightest stress can cause me to lose some degree of spoken or written language I can easily access when I’m in my comfort zone. I often say I’m always one siren or squealing tire away from temporarily losing all of my language, which can be dangerous especially here in NYC. My point is, despite the vast difference between our day-to-day uses of communication, in an emergency, either one of us could end up in a similar situation, unable to express our most basic needs or understand the simplest instructions.

What are some of the challenges you face as an autistic parent?

Competing Needs. We both experience constant sensory input, light seems brighter, noises seem louder, details that non-autistics are likely to miss stand out to us, etc. Our reactions to that input are different, though. The input physically hurts my ears, eyes, etc. so sometimes I react by dulling it with sunglasses or headphones, sometimes by removing myself from environments that overwhelm me. His way of coping with increased sensory input is different from mine. He does sometimes indicate that he wants out of the environment, but rarely as automatically as I do. What he often needs to do is plant himself right in the middle of the action and investigate it until he understands it. So if there’s a noisy fan, I prioritize blocking out the sound. I cover both ears, duck my head, and turn toward the wall. He , by contrast, is likelier to partially cup one ear, and circle the fan peering at it’s components until he figures out exactly where the noise is coming from, vocally imitating the sound all the while. Once he integrates the input, he sometimes seems better able to withstand it than I can. So the challenge is, when we react to different needs with different coping mechanisms, which way of coping wins out? Do we leave the area, which frustrates him, or do we stay longer so he can investigate, which causes me pain that can impede my ability to protect us from strangers’ sometimes hostile reactions to what they interpret as our odd behavior. It’s hard to negotiate a solution in the moment.

What are some of the ways that being autistic helps you be a parent?

Bluntly put, I think I’m more likely to “get it” than a non-autistic parent. My son and I have different experiences of this world that isn’t designed for our brains, but I do know exactly how it feels to be penalized for violating a social convention I don’t understand. I believe we both resent all the rot about our alleged lack of empathy, as scientists are only beginning to study the “intense mind” theory we’ve instinctively understood all along. I get the drowning sensation of other people’s emotions washing over me in waves I cannot process in real time. Most importantly though, I can serve as a role model in a general and in a specific way. My son and I have always been and will always be autistic. Even if I bought into the all the clamour for “a cure”, which I emphatically do not, that’s not going to happen in either of our lifetimes. So not only does he see me as an autistic comfortable in my own skin generally, but he watches carefully as I model various coping mechanisms and self-advocacy techniques. He is, of course, free to adapt the ones that work for him and toss aside the rest, which he has already made abundantly clear to me.

What do you want other parents to know about your family, yourself, or being an autistic parent?

The obviousness of autism des not directly translate into an individual autistics’ level of need. My son’s autism is pretty obvious to anyone who has had any contact with autistics. Mine is largely invisible, which is part of why I wasn’t diagnosed until middle-age and why I’ve had no access to services I needed and still need. My son does have access to high-quality educational and medical services on the upside, but on the downside he’s still occasionally exposed to so-called experts who, however good their intentions may be, can do more harm than good with misguided interventions. What all families of autistics need to know is that a constant, but courteous level of vigilance and communication with autism professionals and autistics, will increase their autistic family members’ options.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation? 

If you go to my Twitter feed, @aspieadvocate, you’ll see in my bio that I call myself a Fangirl of @stevesilberman’s New York Times bestseller and Samuel Johnson Award winning masterpiece, NeuroTribes. Full disclosure, my family’s story is in it, and many autistics and parents I know are in discussed in it too. But beyond my usual self-aggrandizement, and fondness for the author and many friends leaping about in the pages, NeuroTribes up-ends everything most experts thought they knew about autism. Whoever you are, whether you’ve spent most of your life around autistics or think you’ve never met one, (In which case you are mistaken. You have.) this diligently researched and beautifully written book has already irrevocably changed the autism conversation. If you lack internet access, politely demand that your nearest library order several copies, as there will be a waiting list for eager readers. If you have internet access, the minute you finish NeuroTribes, visit the websites and social media outlets for autistic-run organizations such as Autistic Self- Advocacy Network, and Autism Women’s Network, and Thinking Person’s Guide to Autism (for which I am one of a small, but merry band of Neurodiverse editors) All of these organizations can point you toward a cornucopia of autistic writers, visual artists, and musicians.

What services might help autistic parents?

I’ll start by describing my own greatest struggle. Autism professionals might refer this current struggle as “difficulty generalizing.” I am a non-attorney special education advocate, helping parents get appropriate special education services for my kid and theirs. I thought my skills as an education advocate would translate easily to Medicaid advocacy when it came time to apply for Medicaid, a service my son needs now, and especially in the fast-approaching years of transition to adulthood. I was right about his need, but so very wrong about my ability to get it for him without support. Just as my son needs one-to-one instruction for his education and therefore attends as private school with a one-to-one teacher student ratio, I need one-to-one support getting and keeping Medicaid services. I’m light years from achieving that goal Now, imagine I weren’t a formally educated, financially privileged white woman: if I can’t get anywhere in the Medicaid system what chance have autistics of color, or LGBT autistics and their kids? What if English weren’t my first language, or I covered my head for religious reasons? The gulf between person-first social services rhetoric and actual services is horrifying, and unless the government delivers on promises already made and presidential candidates from both parties start answering specific questions with detailed plans about everyone’s access to services, that gulf will widen.


Behavior Is Communication: A Lesson from My Autistic Son

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This originally appeared at Parents.com


Behavior is communication when it comes to autism, especially with a non-speaking child like my 7-year-old son Liam. As much as I try to honor this truth in our interactions, however, Liam’s behavior often seems confusing, and he’s still learning to use the other communication tools (like his iPad picture apps and RPM) that he needs to tell us what he’s thinking and feeling.

For example: Recently, he had some violent meltdowns. They lasted upwards of 30 minutes each, they were happening multiple times every day and in the middle of the night, and my husband and I couldn’t discern the cause.

It was heart-wrenching to watch Liam go from peaceful to raging in a matter of minutes. He would approach my husband or I, drop to the ground, dig his fingers into the back of our knees, and pull us towards him. His hands would fly to my hair, and he’d pull my face towards his, trying to push my face against his cheeks. When I’d ask him: “What’s wrong? How can I help?”, he’d scream fiercely, pinching me, trying to bite, and hitting his head with his hands. Frequently, he’d be so full of adrenaline, all my husband and I could do was evade his hands and teeth or hold him close so he didn’t hurt himself or someone else.

Desperate for answers and at our wit’s end after having tried our many other meltdown-prevention techniques, my husband and I reached out for support. Suspecting anxiety and sensory overload, we talked to Liam’s pediatrician about anti-anxiety medicine. We talked to other parents of autistic kids, our friends, our families, and Liam’s former therapists for advice or suggestions. My mother-in-law, who worked for years with autistic children, offered practical solutions that she used in her school (wrapping kids in blankets, providing deep pressure). Other friends shared tips on what they did with their neurotypical kids during night terrors or tantrums. Although none of these suggestions really worked, it was good to tell other people what was going on and it helped us brainstorm new ways to help Liam. Finally, during a phone call with my parents, my dad asked the game-changing question: “What about his 7-year-old molars?”

Thunderstruck, I realized that this was what Liam was communicating with his surge of meltdowns. Always a late teether, he was finally getting those painful back molars. When I reflected on it, he had all the other symptoms of teething—fever, irritability, lack of appetite— but I hadn’t put them together. By hitting his head, screaming in pain, pressing his cheek against mine, and grabbing the ice cream out of the freezer at mealtime, he had been trying to tell me his mouth hurt.

It was a revelation, and as soon as I got off the phone with my parents, I grabbed Liam’s YES/NO board and asked him “Does your mouth hurt?” A look of relief passed over his face, and he hit “YES” several times.

Tears of relief running down my face, I hugged him, gave him some pain reliever, put numbing gel on the inside of his cheeks, and let him have a huge bowl of ice cream at dinner that night. I was thrilled we’d figured out what he was trying to tell us and that he’d no longer be in terrible pain.

Now, one week later, Liam’s meltdowns have decreased markedly thanks both to us anticipating his teething pain and helping him alleviate it and also by starting some new medication to help with anxiety. Our house is more peaceful, and Liam is more focused and back to his affectionate, cheerful self.

I know that we’ll have more challenging moments in the future, and I know that what works for my son won’t work for all other autistic kids, but I think the takeaways here can help us all, no matter what the future holds or who our children are.

So, when you feel overwhelmed by an autistic child’s behavior, reach out to the people in your life. Talk to friends, family, professionals, and seek out the writing or opinions of other autistic people. Most likely, you’ll find support, suggestions for improving a situation, and perhaps even the answer to what your child is trying to communicate. Also, always remember that behavior is communication for an autistic child. There are reasons behind meltdowns, stimming, scripting, and other seeming quirks. Listening to this behavior can make everyone happier, healthier, and make life easier for us all.


My Neighbor’s Kind Gesture Renewed My Faith in Autism Acceptance

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This originally appeared on Parents.com.

Autism acceptance took a hit last month when the news broke that two couples in Sunnyvale, CA, were suing their former neighbors because they claimed the neighbor’s 11-year-old son with ASD was a “public nuisance.” There’s been a lot of back-and-forth on this story in the media since then, but the prevailing conversation is one of fear, ignorance, and prejudice aimed at kids with autism and their families. Even some of the responses to my fellow blogger, Ellen Seidman’s, call for tolerance and doing no harm shocked me. What happened to a little bit of neighborly kindness and compassion? What happened to some empathy from the community? Was that too much to ask?

My heart ached as I considered the “public nuisance” story and wondered how my neighbors saw Liam, my 7-year-old, non-speaking son on the spectrum, and our family. We just moved into a large apartment complex this summer, and the new environment, with its accompanying sensory challenges, has caused my son a lot of stress. He’s not sleeping much, he’s frustrated and screaming often, and we’re struggling a bit as a family to adjust to it all.

But then something happened last Sunday that restored my faith in my neighbors and put my worries to rest.

My downstairs neighbor—an elderly woman whose door we pass every time we go to the car; who sees us in the laughing moments, the moments of whirling-screaming tantrum; who sees me as I flee to the gym at night; whom we wave to as often as possible, but whose name I didn’t know— called to me from her screen door as we passed on the way back from the park and store. Liam’s arm was linked through mine, and together we waited as our neighbor shuffled through her apartment. She returned a few minutes later with an enormous, exuberant bouquet of flowers.

For me. Because, in her words, “You’re such a good mother, and I see how much you’re doing to help your beautiful children.”

I took the flowers, tears rolling down my cheeks, thanked her, introduced us all, said goodbye, and went upstairs. When I ran into her again later, and tried to explain how utterly undone I was by her gesture, how grateful I was for her compassion, and how wonderful it was to gift us with a bit of unexpected beauty, she just smiled at me.

“We’re all a community here,” she said. “You can’t do this alone, and I’m happy to connect with another neighbor who’s a special education teacher. We are here to help if you need it.”

Needless to say, I was undone all over again, and my heart was full. This is how you can be a good neighbor to a child with autism and his or her family. See them as humans. Ask them if they need help. Offer them kindness. Listen to them. Try to understand their challenges. Accept them in spite of those challenges.

Believe me, your kindness will go a long way.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.comFacebook (Jamie Pacton), and Twitter @jamiepacton.


Here’s Why I Hope

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This originally appeared on Parents.com

Hope may be “the thing with feathers,” as Emily Dickinson writes in one of my favorite poems, but I know it’s not always easy to feel optimistic when raising a child with special needs. As a mom to a non-speaking 7-year-old with autism whom I refuse to label as low/high functioning, I sometimes get comments from readers like, “She wouldn’t be so positive if she really knew the challenges of raising a child with autism…”

But I do get it. My son has a lot of behaviors that are dangerous, troubling, and downright scary. I don’t write about them in detail, because that doesn’t seem fair to him and because I’m trying to preserve some parts of our privacy.

It’s not that I’m trying to silence the suffering of other parents; it’s not that I haven’t bandaged my own wounds while sobbing; it’s not that I don’t lie awake some nights, my stomach twisted into knots of worry. It’s just that I want a narrative of hope to prevail in this conversation about autism.

Easier said than done on some days, I know—but here’s why I hope:

My son is young; his potential is limitless.

John Elder Robinson, writer, father, and Aspergian, wrote something on his Psychology Today blog recently that keeps coming back to me. It’s a good reminder of my son’s potential, and I return to it on days when hope needs a little boost: “Unfortunately the gift side [of autism] often does not show up till the teen years, and sometimes not till adulthood. That’s how it was for me and many other autistics I know. So parents who say their little kids “have no gifts” are in my opinion making a rather premature and dangerous judgment.”

Problem behaviors—biting, hitting, self-injury, screaming— are often expressions of frustration over lack of communication, and addressing that frustration makes life better for everyone.

These sorts of violent, troubling behaviors don’t come from nowhere. For my son and many kids like him, they reflect struggles to communicate. When I shifted my attitude towards trying to understand the root of my son’s frustration and addressing that, rather than just extinguishing the problem behavior, I saw great changes that made me hope. Fostering communication is the answer to so, so many of autism’s challenges.

Non-speaking children and adults with autism are finding their voices.

My spirits are always lifted when I see non-speaking kids, teens, and adults finding their voices using communication methods like RPM. Watching videos like these or reading blogs like “Emma’s Hope Book” remind me that these children’s struggle with silence is like my son’s, and in their triumph, I see echoes of his future success. And that makes me want to work all the harder to help him find his own voice.

Autism acceptance is growing.

Although there seems like a lot of negativity surrounding autism, acceptance is growing. As people learn more about neurodiversity, listen to people on the spectrum, and communities do more to support kids and adults with autism, I feel hope for my son’s future.

Hoping feels better than despairing, and I choose joy as often as I can.

“Hope takes practice,” as my friend Lyn Jones, says. Like all exercise, however, it gets easier the more you do it.

We don’t know the future.

Kids with autism surprise their parents, peers, and professionals all the time. My son’s doing things at age 7 that seemed impossible four years ago when he got his diagnosis. When I worry to too much about my son’s future, I revisit the stories and writings of kids with autism whose futures are brighter than anyone anticipated, like Ido Kedar’s Ido in Autismland, or Tito Mukhopadhyay’s poetry.

And sometimes, when all that fails me, I recite the first stanza of Emily Dickinson’s poem, like a mantra, until the storm has passed.

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

Never stop hoping, my friends. Never. Stop. Hoping. There is always light beyond the darkness.