Posted in family life, information, musings

responding to an autism diagnosis

We received Rondel’s clinical report today, with his official diagnosis of autism spectrum disorder. It was definitely not unexpected, and in many ways it is a huge relief to finally have it on paper with a physician’s signature and notes.

But it is also very hard to read through the report and take in the medical assessment of my child, who I see in all his brilliance and originality and intelligence, and who is being evaluated in light of his struggles and deficits. It is the very embodiment of the pathology paradigm, particularly given the list of recommendations at the end of the report that includes ABA, a therapy that is consistently attacked by autistic adults who experienced it as children. It reminded me of why we used the NODA app for diagnosis in the first place: so that Rondel wouldn’t need to be exposed to the pathology mindset, but would still be able to obtain a diagnosis for support, self-advocacy, and understanding. I just forgot that I as the parent would still have to deal with all of that negativity on his behalf, and buffer him against it.

In an ideal world, doctors could still assign the autism label without calling it a disorder. There are definite differences between the way the autistic mind functions – in the way it perceives the world, in the way it processes information, and in the way it prefers to interact with other people and objects – and the way the majority of minds (neurotypical minds) function. What people often miss, including doctors and therapists, is that the autistic wiring comes with its own unique strengths as well as its own unique weaknesses. A diagnostic process that sought to exist within the neurodiversity paradigm rather than the pathology paradigm could look for examples of both these strengths and these weaknesses, to generate a complete picture of the individual, and to help develop specific plans of support for the individual. In other words, for example: you have autism, and so you struggle with sarcasm and implied humor, you have difficulty reading facial expressions, social interactions and small talk take a lot of energy because of how hard you have to work to keep up and fit in, and certain noises and smells make you want to curl up into a ball or run away – but you also have a mind like a steel trap, the ability to make connections between information and ideas, unique ways of solving problems, and intense loyalty towards the people you are attached to. How can we craft your daily routine to take advantage of your strengths without putting too much pressure on you in your areas of weakness? That would be useful and practical support, without pathologizing the condition.

The pathology paradigm shows up in other places than the medical profession, though. Even a shift in the diagnostic process would take a while to seep through the culture – and until the culture changes, a diagnosis of autism is still going to be met by attempts to sympathize over the tragedy of it, doubt (because your child doesn’t look like he has autism), pseudoscientific “cures”, and even blatant disbelief.

What I wish I could tell everyone I know is that I am not sad or upset at all by Rondel’s diagnosis. His mind is different, and it is different in a beautiful and wonderful way. Will he struggle in a neurotypical society because of those differences? Probably so. But with love and practical support, he can also flourish and give to the world using his unique gifts and talents. He has the focus and the interest to immerse himself deeply in a topic and absorb everything there is to know about it. He has the imagination to see past the status quo and envision new ways of being and doing. And he has support around him to help develop his emotional awareness and executive functioning (two things that were a struggle for me well into adulthood).

What I wish everyone knew is that autism doesn’t just look like one thing. It might look like a mostly non-verbal ten year old communicating in one or two word phrases, dumping out every toy box and taking apart every Duplo tower, standing with the outdoor curtains blowing against his cheek to calm his body down, dancing to his favorite music videos, wanting to be part of the social action around him even as it overwhelms him. It might look like a very verbal twelve year old swinging endlessly because the sensation is so enjoyable, singing the same made-up song over and over again because the repetitive loop is comfortable and fun and transitioning to something else is hard, identifying what day of the week any date falls on, and communicating the love of God in profound and beautiful words. It might look like a four year old melting down because the color he used on his picture doesn’t look the way he expected, talking nonstop to manage auditory input, mimicking the meter and pattern of books and songs in his own games with new characters and situations, wanting a parent to snuggle with him every night at bedtime, or demanding animal documentaries at every possible moment. It might look like an adult struggling to focus on assigned tasks at work because their mind is stuck on other less-prioritized projects, getting into arguments with their spouse because of missed non-verbal cues, falling apart at movies because the emotions and sensations are just too strong and overwhelming, crying because they are running fifteen minutes later than they wanted, or developing a new system of project tracking for their lab from scratch and becoming a source of expertise without formal training because of their analytical skills and desire to learn.

Labeling all of those individuals as autistic helps them to obtain the support they need for the shared weaknesses that accompany the condition (weaknesses partially but not entirely due to living in a neurotypical society), but it doesn’t predict what they will do with their strengths and how their lives will play out. We are just as unique as neurotypical individuals in that regard! I believe – and this is why I think the neurodiversity paradigm is so critical – that if we can stop thinking of neurodivergence as disordered we can create better conditions for autistic and other neurodivergent individuals, a culture where all people can receive support in their areas of weakness and be given the opportunity to explore, develop, and contribute in their areas of strength.

What I wish everyone could see is that the autistic way of seeing and perceiving the world is also beautiful. That a person’s thoughts and feelings are equally valid whether they prefer to speak them, write them down, sign them, or use an assisted communication device. That the same processing circuits that cause us to flap our hands or scratch our arms or chew on our clothes to stay regulated are the same ones that allow us to retain incredibly detailed information and connect seemingly unrelated data in relevant and insightful ways. That the honesty and authenticity that keeps us from betraying or lying to the people we love makes up for our tendency to laugh at the wrong moments in a conversation or our inability to pick up on all your sarcasm or implied humor. That while we may experience and exist in a different way than you do, our differences do not make us less than you.

As an autistic adult (without an official diagnosis yet) raising an autistic child (now with an official diagnosis, hooray!), my plan for “treatment” consists mostly of helping Rondel to understand himself and to understand the world around him, cope with the things that are difficult and embrace the things that give him passion and fulfillment; and of prizing the wonderful individual that he is, and giving him the support he needs (right now, practically, speech therapy and mindfulness practice) to keep his areas of weakness from overshadowing and hindering his talents and strengths. It does not and will never include considering him to be disordered because his mind doesn’t function within that narrow range deemed “normal” or “typical” by the DSM.

Posted in book lists, information, links

differently wired: an introduction

I don’t remember when I first discovered Debbie Reber’s podcast, TILT Parenting, but I do know that I immediately went back and binge-listened to the entire archive, and have assiduously awaited each new episode since. It is a mix of practical advice and principled encouragement, of understanding acceptance and useful support; it encourages parents through their struggles while maintaining the worth, dignity, and humanity of their neurodivergent children. Almost all of the episodes are interviews – some with experts in the field, like Steve Silberman (author of Neurotribes) and Dr. Ross Greene (author of The Explosive Child and found of the non-profit organization Lives in the Balance); others with life coaches and parents of neurodivergent children, sharing their stories and offering real-life suggestions; still others are with Reber’s son Asher, giving the perspective of a neurodivergent child a huge platform and helping parents understand where their children might be coming from.

So when she announced that she was writing a book, I was incredibly excited! When she asked listeners to consider joining her advance book team, I signed up as soon as possible – so I’ve gotten to answer polls about book publicity options, mostly, and should be helping publicize the book’s publication when it launches in mid-June. But unexpectedly, and wonderfully, Reber convinced her publisher to let all hundred-odd people on the team have access to an advance e-copy of the book. I was walking on clouds when I got that news…

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And now that I’ve read Differently Wired: Raising an Exceptional Child in a Conventional World, I want to share it with you, because it exceeded all my expectations.

Reber is a skilled author, adept at blending storytelling, science, principles, and pragmatics into a unified whole. In the first part of the book, she explains the problem: the failure of a system that is “good enough” for neurotypical individuals to accommodate the increase in neurodivergent individuals, trying to force them to change instead of offering supports that would allow them to flourish as they are. In the second part, she outlines eighteen “Tilts” – shifts in perspective that enable change – along with action items for putting each one into practice in some small way right away.

My plan is to share some of my favorite quotes and themes from the book with you over the next two months, and then, when the book launches, to give away one copy here on the blog! Maybe you are feeling frustrated and stuck, wanting to connect with your child more deeply but not sure how; maybe you are feeling hopeless about your child’s future and want to rekindle optimism and find a path forward; maybe you are worn out from fighting for your child’s needs and need encouragement on your journey. Reber’s book can help with all of that – and it is one of the only parenting resources I have come across that (as a neurodivergent individual myself) doesn’t leave me feeling “othered” and uncomfortable.

So keep checking back – I’ll be sharing content from the book, and will open the giveaway as soon as I receive the hard copy sometime in June. If you care for a child who processes, thinks and behaves outside of what people consider to be “normal,” this isn’t a book you’ll want to miss.

Posted in family life, information, musings

acceptance vs. awareness

I’ve been spending a lot of time on Pinterest lately, in an effort to avoid Facebook (and while waiting for my books on hold to become available!), and I’ve found some really encouraging, helpful, and inspiring posts! I’ve also found quite a few off-the-wall recipes that I’ve made to varying familial approval… but let’s not dwell on that.

I think the following two images which I found there are amazing examples of the difference between awareness of autism and acceptance of autism (the first was uploaded directly to Pinterest by a user, and the second is from the Thirty Days of Autism blog):

Notice how in the first poster only the negative effects of autism are mentioned: meltdowns, avoidance, tears, frustration, worry, and stress. Autism is an evil, something that one needs to fight through with hope and prayer, like a sickness that needs to be overcome and that left unchecked would destroy one’s life. (And if it were a sickness, like cancer, that would be more than fine! As it is actually a neurological and developmental difference that is always going to be part of who a person is, however, this attitude can feel like a personal attack on an autistic individual’s identity.)

In contrast, the second poster focuses on the unique behaviors caused by autism – things that are different from normal, but neutral rather than negative: parallel play, a need for space, deep focus and passion, love of technology, and stimming. Autism is portrayed as a part of who that family is – something for which they love each other, not something despite which they love each other. Acceptance gives them the freedom to be themselves, however autistic that self might be, while still receiving unconditional love and support in the midst of their individual needs and struggles.

Let’s just say I know which lens I’d rather be seen through – and therefore, which perspective I want to take when raising my differently wired child.

Posted in information, musings

Autism Acceptance Month

Did you know? April is officially Autism Acceptance Month!

(It’s ok, I didn’t know either until this year. Really the only month I ever remember is Black History Month in February.)

But this year I plan to do something about it! (Not sure exactly what yet, in the offline world, although Chris Bonello of Autistic Not Weird has some good ideas here.)

You may have heard some of the larger autism groups promoting April as Autism Awareness Month, and as a result wonder why I am using the word “Acceptance” instead.

Well…

It is because when I search for “vocal stimming” to find out what forms it takes and how it feels to those who do it (since I do not share this aspect of Rondel’s behavior), the entire first page of search results is geared towards how to make the stimming behavior stop.

It is because the majority of websites that refer to stimming, outside of autism advocacy pages, do so in an incredibly depersonalizing way, discounting the significance of the behavior to the autistic individual and seeing only the oddity of the action in a neurotypical world.

It is because most people have already heard the word autism and know that rates of diagnosis are increasing. The “Awareness” part of the job has already been done!

It is because no amount of “services”, supports, or therapies for autistic children will be sufficient in the long run if society isn’t able to reshape itself to accommodate the autistic way of being – those children all grow up to be adults, after all.

It is because the neurotypical world will lose out on all the beauty, humor, and insight that can come from a different way of looking at things if it keeps trying to fit everyone into a single narrow acceptable mold.

It is because, one day, I hope that every child and every adult will have the freedom to be different – to be openly and proudly autistic, ADD, introverted, extroverted, etc. – without inviting bias or feeling shame.

And after all, autism does not involve a breach of the moral code. There are no objections I can think of to the existence and self-expression of autistic people besides the differences that may make neurotypicals uncomfortable or inconvenienced. Maybe if the neurotypical world could meet the autistic world with genuine acceptance and unconditional love (autists already bend their whole lives around neurotypical systems, after all), the two could create a greater whole.

Posted in information, Uncategorized

preschool special needs screening

On Wednesday, Rondel had a special needs screening with our public school district. Because I wasn’t able to find anything about what to expect before we went, I thought it might be useful for someone if I wrote up a description of the screening, along with some context as to how it fits in to the whole process of qualifying for special education services.

Important qualifiers: this information is specific to the Mesa Public School District (although from what I can tell it is fairly similar across all Arizona districts), and pertains specifically to the preschool/early education screening, without any prior early intervention services.

The Overall Process

Requesting an Evaluation

The first step in accessing special education services is to call the district and request an evaluation for your child. We did this after the incident at church that resulted in Rondel joining the special needs ministry there, as the director of that ministry recommended it as both free and most likely faster than a developmental pediatrician. When you call, you’ll need to provide your address and contact information as well as your child’s name, and they’ll let you know the time, date, and location of the next screening. (By law, this must be within 45 days of your request. Our district does screenings weekly but there can be a lot of demand, so your wait time may be short or you might end up waiting a month or more like we did.)

Screening

The district uses the screening process to limit the number of children receiving in-depth, individual evaluations, for obvious reasons of time and expense. So the screening is designed to determine which kids qualify for that additional evaluation (which is the next step towards receiving services). You’ll receive a brief questionnaire in the mail ahead of time, and it is worth your time to fill it out as completely as possible to ensure that all of your concerns are addressed. The special ed teachers carrying out the screening will read it thoroughly and bring up aspects of your input during the screening.

Evaluation

If your child is determined to qualify for an evaluation (there are several different criteria which I’ll go into later), you will schedule it at the screening. Unfortunately, there will be a bit of a lag time here – Rondel’s evaluation is set for almost two full months after his screening – so it is beneficial to start this whole process as early as possible.

IEPs/504s/etc

This is the part of the process we haven’t reached yet 🙂 Your child’s needs and strengths will be considered in great detail at the evaluation, and if those needs are believed to require additional assistance in the classroom or special services outside the classroom (like occupational therapy or speech therapy), a team of people will work with you to get those services in place. That can be done through the structure of an IEP (individualized education program) or a 504 (federal disability law). This is where you’ll get into the minutia of how to best capitalize on your child’s strengths, accommodate his weaknesses, and teach him the skills he needs most. But like I said, I don’t have personal experience here yet!

A Typical Preschool Special Needs Screening

The Criteria

At the screening, your child will be evaluated in six different developmental areas:

  1. Sensory Skills (hearing and vision)
  2. Cognitive Skills (thinking, concepts, reasoning)
  3. Motor Skills (fine and gross)
  4. Speech and Language Skills (articulation, speech patterns, understanding)
  5. Psychosocial Skills (social/play skills)
  6. Adaptive Skills (eating, dressing, toileting)

To qualify for additional evaluation, a child must score below the cutoff in cognitive skills or in any two of the other skills areas.

Sensory Skills

The first portion of the evaluation is a brief hearing and vision test, to make sure that no physical problems are interfering with the rest of the evaluation. For the vision test, the Welch Allyn spot machine is used; this machine can detect a number of visual abnormalities and if any are flagged, the district will refer your child for a full eye exam. Rondel failed the vision test because the machine detected his anisocoria (that is, one of his pupils is larger than the other; this is sometimes associated with disease but is often just a variation of normal), so a failure here doesn’t necessarily mean something is severely wrong. It’s more of an alert than anything else.

For the hearing test, a earbud-type headphone probe is inserted into each ear, one at a time, and a computer sends sound waves out and records the child’s response. I’m not 100% sure how it works as I was more focused on keeping Rondel from pulling the earbud out before the test was complete. The audiologists running this test were, at least in our case, very understanding of squirmy, sensitive, preschoolers and even said it would be ok to skip the second ear after the first one had passed; however, since he has speech/articulation problems, I had them test both ears. And they both passed – so that was a relief, at least!

I don’t think this kind of test would pick up something like central auditory processing disorder; it is, as far as I could tell, looking purely at the physical mechanisms of hearing. So if that is a concern for your child, you should be aware of that, and potentially address it at the subsequent evaluation or at a private audiologist. Any medical forms like the results of an audiology or eye exam should be brought to the evaluation and will be considered there along with the district’s own observations!

All The Other Skills

After vision and hearing tests are complete, you and your child will meet with a special ed teacher who is going to ask your child some questions and give him some tasks to do with manipulatives and pictures. The teacher will also ask you questions about his self-care and social abilities. There were sorting tasks, stacking tasks, instructions with manipulatives to test understanding of prepositions (e.g., “can you move the bear out of the circle?”), fine motor tasks like drawing and folding, gross motor tasks like walking on a line and hopping on one foot, timed “I Spy” kind of tasks looking for items within a picture, and more. For each task or question, the teacher scores 2, 1, or 0 for a great response, partial response, or inadequate response. The questions and tasks span a wide variety of skills and activities, so you don’t need to worry that your child won’t qualify because they have one really strong area, or that they will look worse than they are because of one really weak area. It seemed rather balanced, especially for simply being a short preliminary screening.

If your child’s speech and understanding seems off, the teacher may call a speech pathologist over to assist with the evaluation, to ensure that articulation difficulties don’t lead to an incorrect assessment of your child’s skills.

Behavioral struggles can, however, lead to lower scores than your child is actually capable of, because there’s no way for the evaluator to know if your child can complete the task and is just choosing not to, or if they are actually unable to complete it. On the other hand, if your child’s behavioral struggles are interfering with following instructions and even carrying out fun activities like some of the manipulative tasks, then they probably need special services anyway and ought to be qualifying for further evaluation! An inability to sit still for more than 2 minutes at a time, or to be quiet when others are talking, or to express frustration in non-violent ways, will definitely make education more difficult for your child, and that needs to be addressed and accommodated.

Summary

While they say to give yourself at least 90 minutes for the screening, it only took us about an hour. They were moving fairly quickly and we were one of the first people in, which probably helped. I’d say the whole thing felt kind of like taking an IQ test adapted for preschoolers… if I had to describe it in a way that my preschooler could understand, I’d tell him that he was going to get to answer questions and show a teacher how smart and capable he was at doing different kind of things like building and sorting and jumping. I’d also tell him that it would be a somewhat noisy, stimulating environment with a lot of other people around, and that he would be expected to control his body and his words as if he were in a library, so that he could be prepared for that.

What I’d tell you, the parent considering taking their child for a screening, is not to be anxious. The evaluators are therapists, special ed teachers, and speech pathologists; they don’t have to worry about the bottom line of the budget, and they genuinely want to see the best possible outcome for your child. The sincerity, compassion, and helpfulness of everyone I encountered blew me away. Even if you are unsure of the educational path you’ll be taking with your child, it’s worth the time to get them evaluated so that you, the parent, have a name for your child’s struggles and recommendations for how to work with those struggles. It can help you adjust your expectations of your child to a more realistic standard, and give you the perspective you need to approach them from a respectful, relational direction instead of from a paradigm of discipline and punishment.

So if you have any concerns about your child’s development, especially if someone outside your family can corroborate those concerns, don’t hesitate to call your school district and request an evaluation! The earlier you know what’s going on, the earlier you can structure your child’s environment in the most helpful way possible for their development. I hope this gave you a more complete picture of what to expect at the very beginning of the special education process!