An Advocate’s Guidebook for Caregivers of Autistic Kids

Advice from Two #ActuallyAutistic Adults

This post is a collaboration between Peace I Give and Unmasked. Tee Mone’t runs the page, Unmasked, on Facebook, and Unnmasked on Instagram. Diagnosed as an adult with substantial support needs, she works to help others understand what it means to be autistic. She is here to educate and most importantly, learn.

“My child just got diagnosed with Autism Spectrum Disorder. What do I do?”

If this question is on your mind right now, you’ve come to the right place. We’re here to help. It seems that when caregivers of newly diagnosed Autistic children start looking online for guidance, too often they’re bombarded with recommendations from people who understand autism purely from a professional standpoint. They can miss important posts like this one from Autistic Mama. Misinformation about autism is a quick Google search away, and this article is the antidote. If you want to know what you might really do for your Autistic child in plain language from two #ActuallyAutistic people, we invite you to read on.

Facing a brand new experience can be challenging and your feelings around this new diagnosis are valid. Let us reassure you and tell you that there is nothing to fear and nothing to mourn. Your child is not broken but is the same child you have loved all along. Autistic kids are just like any other child with the same very human need for understanding, support, and love. Parenting an Autistic child is simply parenting a child. All children have a unique composition of strengths, weaknesses, needs, and capacities that caregivers must navigate. The difference when it comes to Autistic kids is that you have the wisdom of an entire community of Autistic adults at your disposal to help you understand where your child is coming from. As you become better acquainted with how to connect with your child and address their specific needs in the healthiest way possible, you and your child will both be empowered.

Disclaimer

Now, at the top here, we must include a disclaimer that Autistic people are not a monolith. We don’t all feel the same way or share the same beliefs. As the saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” In this piece, however, we will describe how the vast majority of Autistic self-advocates wish to be understood. Neither Peace I Give nor Unmasked criticizes any Autistic person for choosing other forms of self-advocacy that diverge from the majority preferences. However, those decisions lie strictly within the Autistic community. If you are not Autistic, it is not your decision to make.

Guide to Contents

What is Autism?

What is the Autism Spectrum?

Autism as an Identity

Disclosure Etiquette

Will My Child Ever Fit In?

Is Early Intervention Necessary?

What About Therapies?

Will My Child Ever Be Independent?

How Do I Discipline My Autistic Child?

How Do I Get My Child Diagnosed?

On IEPs and 504 Plans

Controversies Explained

How Do I Best Love My Autistic Child?

What is Autism?

Autism is a natural neurological variation in humans. Autistic brains are different from allistic brains. Autistic kids are not allistic kids waiting for someone to break them out of a mental prison. They are born as whole and dignified human beings in need of the same care and attention as all children.

Autism isn’t merely a diagnosis. There is an entire, global Autistic community out there ready to welcome your child. The Autistic Self-Advocacy Network (ASAN) describes the Autistic community as follows:

When we say “the autistic community”, we mean everyone who is autistic. We mean:

  • Autistic people who need a lot of support in their day-to-day life, and autistic people who need very little support.
  • Autistic people who can speak, and autistic people who are nonspeaking.
  • Autistic people who also have an intellectual disability, and autistic people who don’t.
  • Autistic people who have other disabilities besides autism, and autistic people who don’t.
  • Autistic people who were diagnosed by a doctor, and autistic people who figured out they were autistic on their own.

We are all a part of the autistic community, and we have to work together to make sure all of us have our voices heard. Every autistic person belongs in the autistic community. There is no “wrong” way to be autistic. Trying to separate certain groups of autistic people from the autistic community hurts all of us.

What is the Autism Spectrum?

A lot of people who first encounter autism assume that the spectrum is a linear progression from “mild” to “severe.” Please understand that functioning labels like “mild,” “severe,” “high functioning,” and “low functioning” can be extremely harmful to Autistic people, including your child. Autism is a spectrum, but that spectrum looks a lot more like an equalizer than it does a line.

Image of a sound equalizer machine

Neuroclastic does a great job of explaining the autism spectrum in this post, but in short, the spectrum encompasses a handful of domains including but not limited to social aptitude, intensity of interests, motor control, and so on. Autistic people are measured against allistic people in each domain, which is inherently ableist. It’s like assessing a computer programmer’s untrained singing voice against professional opera singer, Maureen McKay. The computer programmer may have a fine voice, but it certainly won’t be as polished as McKay’s. Each person needs to be embraced for their inherent worth and appreciated for the gifts they bring to this world. Autistic people bring so much good to humanity.

Sadly, in most areas of the world, societies do not operate in a way that is inclusive of Autistic brains, so Autistic people are largely viewed as deficient. In contrast, the neurodiversity paradigm changes the perspective, declaring that a diversity of neurology among humans is normal, necessary, and natural. And, the social model of disability helps to challenge the idea that disabilities must be limiting in and of themselves. The social model demonstrates that, with acceptance, inclusion, and adequate accommodations and technology, nearly every disabled person could have equal access to social spaces. It’s a lofty idea and we can all help to improve the quality of life and access to shared spaces that disabled people deserve.

Disability is not a bad word and, for the majority of us, autism is disabling because society disables us. Functioning labels are part of the way society oppresses us. For example, some of the people who read this article may say to themselves, “the authors of this piece can’t be Autistic” because of the narrow view of autism they have encountered culturally. This is the kind of mindset we want to gently challenge.

Autism as an Identity

Much like other disabled groups that have developed passionate self-advocacy within their ranks, many Autistic people capitalize the “A” in Autistic in recognition that it is part of our identity. It’s who we are. It cannot be separated from us and it cannot be treated or “cured” without destroying us.

Image of 4 stick figures.

1. "Suffers from autism" shows a rainbow knife stuck in the stick figure's head.

2. "On the spectrum" shows a stick figure standing on a rainbow smear.

3. "Person with autism" shows a stick figure holding a rainbow colored bag.

4. "Autistic person" shows a stick figure whose head is colored in with a rainbow circle.

The bottom of the image says "Neurology is not an accessory
www.identifyfirstautistic.org"
Update to a graphic first posted by www.identityfirstautistic.org as seen on social media

If you happen to see someone on social media with an Âû in their name, they likely consider autism to be a critical aspect of their identity. Âû is a reference to the Autistic Union, which has a list of 10 Points describing its ethos. And, Âû is a helpful way for Autistic people to recognize each other quickly in virtual spaces.

Autism as an identity is one of the reasons that Autistic people overwhelmingly reject person-first language (child with autism) in favor of identity-first language (Autistic child). It’s why you’ll notice that Autistic adults often dislike euphemisms like “on the spectrum.” It’s why many of us despise puzzle piece mentality, a position you may be surprised to learn is backed up by science. And, it’s why Autism Speaks is considered a hate group by most within the Autistic community.

Autism is an identity that deserves to be embraced, understood, and accommodated by our greater culture. By the same token, Autistic people have every right to vent about how difficult and painful it is to be Autistic in an oppressive environment.

Many of us engage in a coping technique called masking. If you’ve ever presented yourself differently from the person you really are in order to avoid an argument or get ahead in your career, you probably have an idea of what masking feels like. For Autistic people, it can be a constant requirement in order for us to navigate a world that was not made for us. We pretend to be neurotypical as best we can, so we can avoid uncomfortable situations, “fit in” more readily with others, and go unnoticed. It’s a survival mechanism and it is costly for us. Many Autistic adults must go to great lengths to undo the damage that masking has done to us. So, if an Autistic person lets down their mask around you, consider it a compliment. That means you are trusted to see us as we really are, stims and all.

Check out this post from Tee Mone’t of Unmasked about the raw truth of what masking really is:

Allistic caregivers are crucial to the wellbeing and safety of their Autistic loved ones. A positive, affirming relationship with a caregiver is not only helpful, it may even be life-saving. Caregivers can uphold the dignity of their Autistic loved ones by getting consent before talking about them, limiting the personal information shared about them, not complaining about autism or Autistic people, and taking their needs very seriously. This excellent infographic from the Therapist Neurodiversity Collective provides a snapshot of ways in which to embrace Autistic identity by refusing to pathologize us:

Therapist Neurodiversity Collective International

We Don't Treat Autism

Here's Why:

There is no cure for autism and therapists should not provide therapy with an intent to "cure" autism.
Pathology Model: Autism "refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning."

Neurodiversity Model: ASAN (Autistic Self Advocacy Network): "Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. ASAN believes that instead of trying to change disabled people, we should work to make sure people with disabilities can access what we need."

Autistic People:
Think differently
Process senses differently
Move differently
Communicate differently
Socialize differently
May need help with daily living
https://autisticadvocacy.org/about-asan/about-autism/
https://autisticadvocacy.org/about-asan/position-statements/

Some Autistic people have intellectual disability, others do not. Some Autistic people can speak, others do not speak. Some Autistic people need a lot of support in their daily lives, others do not. Some Autistic people have other disabilities in addition to autism, others do not.

Therapies should help Autistic people, not train them to appear “less autistic” or meet neurotypical standards or clinical outcomes.

We don't "Treat Autism". "Autism Therapy” looks like:
ABA/Behavior Modification
Training Neurotypical Social Skills, teaching masking
Insisting on spoken communication/Verbal behavior
Gatekeeping AAC
Masking Sensory Processing issues
Denying access to supports, accommodations and modifications
Extinguishing echolalia, stimming or Autistic "quirks"

Empathetic and Respectful Therapy for Autistic people looks like:
Unrestricted AAC access
Improving communication abilities using a total communication approach
Teaching self-advocacy
Providing supports, accommodations and modifications in schools and for activities of daily living
Perspective-taking, problem solving/ empowerment
ST/OT/PT using a trauma informed approach
© 2020 Therapist Neurodiversity Collective

For a free pdf download of this infographic or any of our others, go to:
https://therapistndc.org/education

It’s important to note here that there are some Autistic people who are more discreet about their autism, perhaps because they have experienced substantial discrimination or because they view it primarily as a medical diagnosis or because other aspects of their identity are more pronounced. It is up to Autistic people ourselves to decide how we will move through our lives. The best thing our families can do for us is to support us in whatever way we need. Some of us are out and proud about being Autistic. Others are just living life. There’s no shame in any of it.

Disclosure Etiquette

Generally speaking, it is considered bad form to tell people your child is Autistic without the child’s consent, in the absence of a seriously compelling reason. For instance, you’d likely want to tell medical professionals and your child’s school, so they can better understand your child’s needs. You’d probably not need to tell your family and friends unless they care for your child and require support in providing the best care. You definitely don’t need to tell random strangers or research companies trying to buy your child’s DNA for dubious purposes.

Use great care and discretion with the understanding that disclosing your child’s diagnosis is an extremely intimate and intrusive act. And, finally, consider what information needs to be shared. Do you need to state that your child is Autistic or do you need to let the person know what to expect? For instance, if you’re at a park with friends who don’t know your child’s diagnosis and you know your child tends to elope, you might say, “[Child] sometimes runs off unexpectedly. Would you mind helping me keep watch?”

There is nothing shameful about being Autistic or having an Autistic child. What we’re highlighting here is the importance of respecting the privacy of Autistic people and allowing us the dignity of controlling the way information about our personal identities gets exposed.

Now, if you’re wondering about disclosing to your child their own diagnosis, yes, please! From the moment you know, tell your child. Openly, talk about autism in positive, factual ways as they grow up. Help your child navigate the world by showing them how. Things like social stories (keeping in mind that social stories have a potential to harm) and role playing can be helpful tools to give Autistic kids a concrete view into the hazy, amorphous world of social interaction. Talk with your child and observe their behavior for clues into what you could be doing to better support them. Accept that Autistic is who they are. Not what they have.

Will My Child Ever Fit In?

Depends on who your child interacts with. It’s so important for caregivers of Autistic children to recognize how difficult it is for Autistic kids to make a way for themselves when they’re thwarted at every turn. Autistic children must be given opportunities to connect with other Autistic children as a basic human need. From crucial childhood relationships with both Autistic and allistic children, Autistic kids learn what it means to be a friend. And, guess what, Autistic relationships have been studied! Here’s what we know.

  • Autistic people ARE empathetic (more on this below).
  • Autistic people ARE social.
  • A study on Autistic kids aged 8 to 15 years found that they believed they were good friends to others and also that they enjoyed social interaction.
  • At least 80% of Autistic children have at least one friend and the majority enjoy their friendships.
  • Lack of supports is what excludes Autistic kids from social experiences, not autism.
  • Allistic biases against Autistic people disappear when impressions are based on conversation rather than audio-visual cues (meaning, prejudice against Autistic mannerisms keeps allistic people from having wonderful interactions with Autistic people).
  • Autistic people tend to be more invested in their social partners and prefer to have genuine conversations rather than small talk.
  • Autistic adults often prefer the company of other Autistic adults (so get your kids into Autistic social experiences early on).

A special note on empathy. The outdated claim that Autistic people lack empathy is a lie. What’s true is that Autistic people struggle with cognitive empathy when it comes to allistic people, meaning, we can miss certain social cues and misunderstand situations. On the other hand, our affective empathy, the ability to bear with others, is in full effect for lots of Autistic people. Sometimes, affective empathy is so intense and unmanageable that it can lead to meltdowns and shutdowns. Many Autistic people feel deep, genuine, visceral emotions. However, while hyperempathy is a well known Autistic trait, different Autistic people experience varying degrees of empathy, just as it is in the neurotypical world. And, our empathy may not look the same as an allistic person’s.

Relating to Autistic people requires effort on the part of allistic people. Dr. Laura S. DeThorne wrote about this in her piece entitled, Revealing the Double Empathy Problem. In it, she pinpoints a most challenging barrier for Autistic people who are trying to relate to allistic people. She says,

Although the misunderstanding may be bidirectional, it disproportionately stigmatizes autistic people when their perspectives are not adequately represented within institutional power structures, like education, research, and medical systems. When autistic perspectives are not heard, it becomes easy for autistic behavior to be misunderstood and pathologized. Note, for example, much of the autism literature focuses on helping autistic individuals understand nonautistic perspectives, rather than the other way around.

As a caregiver, you can work toward understanding your child on their terms and showing them what a healthy and respectful relationship looks like. All Autistic people communicate. Sometimes it just looks a little different from what you might expect.

The Autisticats
@autisticats

Autistic people, like Deaf people, are a sociolinguistic group with our own culture and norms of communication. 

The communicative burden in conversation between autistic people and NTs [neurotypicals] should not fall solely on autistic people.

Communication requires effort on all sides.

Is Early Intervention Necessary?

In the United States, children under the age of 3 are eligible for Early Intervention services when they aren’t meeting their expected milestones and/or if they have diagnosed disabilities that require support. When autism is suspected, many caregivers are pressured by medical professionals and peers to get their kids assessed and into some form of “treatment” as early as possible. We have even seen claims that Autistic children will never “improve” if their caregivers wait too long for “treatment.” That’s simply not true. Autistic brains don’t need treatment any more than neurotypical brains for the mere existence of a particular neurotype. If that weren’t enough, a recent meta-analysis found that there is insufficient evidence to recommend early intervention or treatment for children. Pressure to push children into Early Intervention can be wielded as a scare tactic and that helps no one.

Early Intervention is as embroiled in anti-Autistic ableism as any intervention offering “help” to Autistic people from an allistic perspective. The therapies offered generally seek to bring an Autistic child as close to typical expectations as possible, which is ableist. Autistic people do not need to be more allistic in order to move freely through and contribute to the world around us. So, while Early Intervention is not necessary, we do understand that it is a cost effective way to access services like occupational therapy that can help Autistic kids a great deal. Whatever you decide to do, we encourage you to brush off any pressure that comes your way about changing your child.

What About Therapies?

Your child will very likely be referred for Applied Behavior Analysis (ABA) if they haven’t been already. ABA, and related therapies, are promoted almost exclusively for Autistic children which is a red flag. Here are some other red flags. It’s important to know that most Autistic self-advocates consider ABA to be harmful at best and abusive at worst. In fact, a 2018 study affirmed what Autistic people already knew: ABA is linked to post-traumatic stress disorder (PTSD). Specifically, exposure to ABA makes Autistic children 86% more likely than their ABA-free peers to meet the criteria for PTSD. And, ABA isn’t really evidence-based in the first place. The reality is that autism requires no treatment and Autistic kids would be much better served spending their time learning how to advocate for themselves. Please see “ABA Treats a Problem Your Child Doesn’t Have” and “The Great Big ABA Opposition Resource List,” which will answer many questions you may have about ABA.

Autism is simply a natural way of being. That’s not to say Autistic people don’t need any therapy. There are various forms of therapy that can help Autistic people cope with living as strangers in a strange place without having to be subjected to behaviorism. Different people benefit from different things, so having an open mind can help you find exactly what will serve your child the best.

  • Occupational Therapy: OTs help identify gaps between a person’s needs and their ability to meet those needs. Autistic people often need support when it comes to motor skills (e.g. dressing/undressing and tying shoes), proprioceptive abilities (e.g. tolerating the taste and texture of food, and knowing when it’s time to urinate), and self-regulation. OTs have the knowledge and experience to recognize where there are disconnects and help Autistic kids integrate their senses and practice new life skills. 
  • Speech Therapy: Speech is widely considered the superior form of communication. It’s not. All forms of communication are valid. Some Autistic people prefer speech, some prefer speech some of the time, and some don’t prefer speech at all. There are many reasons for these differences. What Speech Language Pathologists can do is give your child the tools to improve their speech and/or other modes of communication.  
  • Physical Therapy: PTs specialize in human movement. If your child needs support with balance, motion, or spatial awareness, a PT might be able to help. There is some overlap between what OTs and PTs do for Autistic kids, so our general suggestion would be to start with OT and add in PT, if needed. 
  • Dialectical Behavior Therapy: DBT is a cognitive-behavioral therapy that helps people practice regulating their emotions, relate more easily with others, and handle stress, all of which are skills every human person certainly needs. Given the strain of moving through this world as an Autistic person, DBT is often a great fit for addressing lingering traumatic experiences. Side note: Even though DBT and ABA contain the same word, they are NOT the same. DBT is a true behavioral therapy that is beneficial for many. ABA is a behaviorist therapy that is harmful.

And, finally, a note on comorbidities. Autism is a neurology unto itself with its own strengths and weaknesses. Oftentimes, people conflate other diagnoses with autism as though they are one and the same. An autism diagnosis is not dependent on things like IQ, aggressive behavior, hyperactivity, and so on. When present alongside autism, these things may or may not need to be addressed professionally. And, if they do need to be addressed, the supports may be beyond the scope of this particular article. (In other words, we can’t cover every possible therapeutic option, so please seek out support from Autistic adults.)

Will My Child Ever Be Independent?

Are we meant to be? Do you know anyone who is completely off-the-grid and self-sustaining? Seems like it would be a lonely life. We may wonder what the future holds for Autistic kids, but independence need not be a goal. We are, by nature, an interdependent species. We need connection to thrive. So, one of the things Autistic children need to practice is self-advocacy. Empower your child to ask for what they need. Reveal all the avenues available. Some Autistic people do need lots of hands-on assistance into adulthood (which is probably what most people mean when they wonder about independence). That’s totally fine. They are as fully human, fully worthy, and fully deserving of fulfillment as is any person. It’s natural to worry when you’re responsible for the care of a child, but put that nervous energy into helping your child build a network of support.

How Do I Discipline My Autistic Child?

You teach an Autistic child about the world in the same way you’d teach an allistic child, by figuring out how they learn best and presenting information in that way. There is absolutely no need for intrinsic motivation killers like rewards or punishments. Especially not physical punishment. There’s no need to control your Autistic child or force their bodies to do things that are uncomfortable for them (such as demanding eye contact or using hand over hand instruction). When you create an environment where your Autistic child can succeed, your child will have their best opportunity to grow in their relationship with you and to trust you.

As the caregiver of an Autistic child, your child will be best served by your acceptance that most Autistic children have specific needs around sensory processing. Autistic processing of sensory input is different from that of the allistic brain. Responses tend to be more pronounced and overload can be unbearable. Some things to know.

  • Sensory Seeking and Sensory Aversion: For most Autistic people, our experiences with external stimuli can be heightened. Sensory Seeking means craving input to address uncomfortable understimulation of the nervous system. Seeking may look like enjoying being extra loud, using our bodies to crash into the world around us, and generally filling up a space. Sensory Aversion means craving escape to address uncomfortable overstimulation of the nervous system. Aversion may look like extreme discomfort with anything touching our skin, blocking our ears to muffle a cacophony of sounds, and covering our eyes to shield them from bright lights. While many Autistic people tend to experience either seeking or aversion, given the right circumstances, we can all experience them both. 
  • Meltdowns and Shutdowns: To understand meltdowns and shutdowns, think about the most upsetting day you’ve had recently. Maybe your car broke down, causing you to lose your job. Then you tried to take the bus home only to find that you left the gate open and your dog has run away. And so on. Just a rotten day. You can relate to jab after jab sending you over the edge. When the needs of Autistic people are persistently unmet, the descent into overwhelm is like your really bad day. You might go home and cry, call a friend, or try to relax in front of the TV. Autistics can end up so dysregulated that these calming techniques don’t help. The end result is an uncontrollable explosion of emotion and physiological tension (i.e. a meltdown) or a complete reset of capacity (i.e. a shutdown). Both are upsetting for Autistic people. No one wants to feel that way, so it’s helpful for our families to understand what we need in order to avoid getting to that point. Meltdowns and shutdowns are not necessarily a given. They can often be prevented by addressing our needs.

If you are interested in a gentle discipline approach to guiding both Autistic and allistic children, these articles may help you as you figure out exactly what your child needs most in order to feel safe, secure, and supported.

How Do I Get My Child Diagnosed?

While this post is about how to proceed with a new diagnosis, we have included this response to those who may ask about how to obtain a diagnosis. Generally speaking, in the United States, autism assessments for children are conducted by developmental pediatricians and pediatric psychologists. Your child’s standard evaluation may involve questionnaires and interviews for the caregivers, observation of the child, and administration of the Autism Diagnostic Observation Schedule (ADOS) and/or the Autism Diagnostic Interview-Revised (ADI-R), along with a review of observations from the child’s teachers and other professionals, if applicable. Be aware that masking (as described in the Autism as an Identity section) can interfere with a medical professional’s ability to diagnose your child. The very thing that helps keep us safe in other circumstances can end up making it more difficult to get the accommodations we need. Please let your child know they don’t have to hide who they are with the doctor.

If you are in the United States, be aware that your insurance company may require a referral from your child’s pediatrician or family doctor. If you cannot afford a standard evaluation or are uninsured, organizations like Easterseals may be able to provide you with discounted services. Be aware, however, that these organizations are not typically autism-forward and may recommend ABA therapy.

In order to be diagnosed, your child must meet the criteria set out in the Diagnostic and Statistical Manual of Mental Disorders (current edition, DSM-5), which includes an unfortunate “severity” scale of 1, 2, and 3, each corresponding to an increasing need for supports and services. These numbers represent how burdensome the doctor expects your child to be and that is a problem. The severity scale also does not account for changes in capacities as your child grows up and it is heavily influenced by your child’s ability to speak. However, speech is not required for communication. Do not be overly concerned if your child doesn’t speak. Take note of the number your child is assigned, but don’t allow it to dictate your acceptance of your child’s capabilities.

Many caregivers question if pursuing a diagnosis is worthwhile. The Autistic community is somewhat split on this. A medical diagnosis can open many doors for your child to receive accommodations and modifications. It can also, sadly, present unwanted barriers, such as being barred from certain jobs, military service, and even being disallowed from emigrating from one’s home country. Despite the potential challenges, childhood diagnosis tends to be easier to obtain. It is incredibly difficult to obtain a diagnosis as an adult, which is why the Autistic community embraces self-diagnosis. We encourage you to read this beautiful post from Autistic Mama about the reasons why early diagnosis can be life-changing. If you want to wait or not pursue a formal diagnosis at all, your child may still be eligible for supports in school. In the United States, schools can conduct their own internal assessments to provide your child with appropriate accommodations and modifications while in school, even absent a formal, medical diagnosis.

On IEPs and 504 Plans

We promised plain language at the beginning of this post and we’re about to take a dip in the blistering world of federal law, so please bear with us as we keep this as simple as possible. We strongly recommend checking out Wrightslaw and the Wrightslaw books if you want to get the most accurate information about accommodations and modifications.

In brief, the federal Individuals with Disabilities Education Act (IDEA) guarantees the right of your child to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). Part of giving your child a FAPE involves establishing a customized blueprint for their educational track via an Individual Education Program (IEP) or a 504 Plan.

IEPs are comprehensive action plans that detail precisely which combination of services will provide the ideal learning environment for your child in a special education program. The custodial caregiver (e.g. parent, grandparent, etc) is part of the IEP team and advocates on behalf of the child. The assessment process to be deemed eligible for an IEP can be lengthy and tedious. If your child already has a medical diagnosis, this is one of the times when it comes in very handy. IEPs are nearly limitless. If your child needs a solution, this is where you put it. The IEP is also where the IEP team declares the LRE for an individual student be it a specialized separate class or some form of integration into general education.

504 Plans are guaranteed under the Rehabilitation Act of 1973. Unlike IEPs, 504 Plans do not entitle children to the extensive services of special education. You can think of them as a less stringent counterpart to IEPs that are especially useful for general education students who have specific areas where they need support, such as dyslexia. Students can technically have both an IEP and a 504, but having both is not necessary. It’s important to note that IEPs can and usually do include everything that would be written into a 504 Plan, but the reverse is not true.

In order to obtain supports for your child through an IEP or a 504 Plan, the first step is to contact the school (typically a school/guidance counselor or an assessment coordinator) to request an evaluation. You’ll want to be prepared with as much information as you have about what your child needs. Check out this write-up for a detailed overview of the process.

Controversies Explained

  • ABA: Applied Behavior Analysis is billed as a “treatment” for autism, but it has widely been met with scorn due to its proclivity for causing post-traumatic stress disorder in Autistic children. It’s no wonder as the “father” of ABA had this to say about Autistic people, “You see, you start pretty much from scratch when you work with an autistic child. You have the person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense.” For more information on why ABA isn’t welcomed by Autistic people, check out ABA Treats a Problem Your Child Doesn’t Have.
  • Asperger’s: In the United States, Asperger’s has fallen into medical disuse as a diagnosis as the DSM-5 rightly condensed autism into a single diagnosis. Many Autistic people who were originally diagnosed with Asperger’s continue to use this term. However, allistic people should be aware that Hans Asperger was a Nazi eugenicist who was responsible for the murder of hundreds of disabled children (warning: linked article contains functioning labels). Some people have pointed out that he may not have been a Nazi sympathizer, but rather a person who fell in line in order to save his own life. Even if that is the case, he still sent hundreds of children to their deaths and does not deserve the honor of being associated with Autistic people. Please use “Autistic” instead as a caregiver.
  • Autism is a Superpower: The belief that Autistic people have superhuman powers is a form of inspiration porn that dehumanizes and others us. We are as human as any other person. Our autism is often disabling, because it has not yet been normalized by the broader culture in which we live. Because of our different neurology, there are some areas where we might excel. It’s ok to celebrate accomplishments by virtue of our efforts. It’s not ok to celebrate accomplishments because we are Autistic.
  • Autism Parent: Curiously, many allistic parents of Autistic children proclaim themselves as “Autism Parents” but are often unwilling to adopt the identity-first language most of us prefer (i.e. Autistic person). “Autism Parent,” and the use of autism as a lead into any conversation about their kids, gives the impression that the caregiver is donning their child’s identity as a sort of uniform to showcase their experience caring for an Autistic person. And, worse, “Autism Parents” often say things like “Autism won today” to indicate they’ve had a bad day. Imagine saying such a thing about any other identity. Please use “Parent of an Autistic Child” instead.
  • Autism Speaks: This organization has developed such a notorious reputation within the Autistic community that many of us refer to it as A$ (that’s a dollar sign in reference to the organization’s large but ineffectual budget). Autism Speaks spent much of its existence with no Autistic voices in its leadership. From its earliest foundations, the organization pushed the narrative that autism was a nefarious creature stalking families to ruin their lives. To add insult to injury, Autism Speaks spends a mere pittance on helping Autistic people and their families. For more information on why Autistic people, by and large, do not support Autism Speaks, check out this masterpost. We encourage you to connect with organizations that are led by Autistic people, such as the Autistic Self-Advocacy Network.
  • Functioning Labels: “Mild,” “Severe,” “High Functioning,” “Low Functioning,” “end of the spectrum” and so on. These are functioning labels that are meant to communicate to allistic people just how much Autistic people diverge from neurotypicality. Even the levels assigned by diagnosing doctor’s that are meant to indicate anticipated support needs end up communicating how burdensome we are expected to be for our caregivers. Yet, Autistic people’s capacities can slide all over the place, even hour to hour. Functioning Labels provide no useful information. When talking about Autistic people, avoid discussing deficits. Instead, help us advocate to meet our needs. For example, rather than saying “my child is non-verbal,” try “my child uses augmentative and alternative communication (AAC).”
  • Person with Autism: Survey after survey demonstrates that Autistic people, on the whole, prefer identity-first language. Autism isn’t a feature. It is the very lens through which our brains process the world. Every Autistic person has an Autistic mind. We cannot be allistic. We cannot “age out” of autism and we cannot be “cured.” It is who we are, therefore, it is always appropriate to use identity-first language (Autistic person) unless you’re speaking about an individual who has specifically indicated that they prefer person-first language.
  • Puzzle Piece: Since the puzzle piece is ubiquitous, you might not realize that Autistic people generally do not identify with it. The puzzle piece was created by an allistic member of the National Autistic Society and it originally featured a crying child as a symbol portraying autism in contrast to the way “normal” people are supposed to be. It says Autistic people are a baffling mystery. That our minds aren’t complete. And, it garners such ableist phrases as “Until All the Pieces Fit.” Parents of Autistic kids – the group most likely to use it – go to great lengths to explain why they don’t see the puzzle piece as a negative thing. However, a 2018 study confirmed once and for all that the puzzle piece is harmful to the Autistic community. The Autistic community has embraced the gold infinity loop as a more appropriate representation of who we are. (The rainbow infinity loop is a positive symbol for neurodiversity.)
  • Sesame Street: In April of 2017, Sesame Street debuted Julia, an Autistic girl who would introduce children worldwide to autism. Many Autistic adults were overjoyed, especially given the fact that Sesame Street had spent years developing Julia with the Autistic Self-Advocacy Network (ASAN). We knew she would be a genuine reflection of Autistic people. Sadly, in 2019, the partnership between Sesame Street and ASAN ended. In a devastating betrayal, Sesame Street elected to partner with Autism Speaks instead and promote their stigmatizing resources for parents of newly-diagnosed Autistic children.
  • Symptoms: Autistic people have traits, not symptoms. The way we think and behave is not the result of an illness. It is a manifestation of our neurology and our individual personalities. Use of the word symptom is an example of the pathologizing of autism. Because we are different, there is a tendency from a medical perspective to pinpoint and correct those differences and that tendency makes its way into the literature around autism.
  • Violence: An unfortunate stereotype exists that Autistic people are prone to violence. In reality, violence is not part of the criteria for a diagnosis. It is not indicative of autism. So, why do caregivers of Autistic kids talk about violence so much? It’s a misunderstanding of what the “violence” actually is. All of us, Autistic and allistic alike, understand what it’s like to be worn down by life and pushed to the limit. This stress is the root of much discomfort, frustration, and even anger. It’s something that Autistic people experience significantly more often than allistic people, because we are moving through a world that does not operate with our needs in mind. Some Autistic people, particularly children, become so overwhelmed that they lash out. It is a form of communication that tells everyone around them that they need help. Not censure. Autistic people are not inherently violent.

How Do I Best Love My Autistic Child?

This one isn’t just about feeling a tender, nurturing draw toward an Autistic child. We know you love your child deeply or you wouldn’t be here. This one is about loving an Autistic child for who they are. Not for who they might be if they weren’t Autistic. It’s about recognizing your child’s stimming and supporting them by providing stim toys and room to stim without judgment. It’s about engaging with, rather than pathologizing the great interest your child takes in the things they love the most. It’s about viewing Autistic people as creative communicators rather than awkward and socially inept. It’s about going directly to Autistic adults, and professionals who listen to Autistic adults, to ask questions about how to support your Autistic child. And, it’s about folding your Autistic child into your family life in the most natural ways. Full acceptance. Unconditional love. Exactly what every caregiver should do for every child. It’s nothing remarkable and it’s the most remarkable thing of all.

We’ll leave you with this video that sums up how we want parents of Autistic children to choose to view their kids in hopes that the more our world understands autism, the higher quality of life all Autistic people can enjoy.

Looking for More?

Our friend, Autistic Mama, is working on another resource she’s calling Autism Diagnosis Journal: A Parent’s 30 Day Guide to Confidently Process Their Child’s New Autism Diagnosis. Autistic Mama, Kaylene George, is an Autistic mother of 6 neurodiverse kiddos, including one Autistic child. Her life’s work is helping parents of Autistic children become better parents, advocates, and autism allies. Her efforts serve to make our society more accepting and inclusive to Autistics. Her newest project promises to be comprehensive and thoughtful, and we encourage you to keep watch for when it drops.

*Please comment below or message Peace I Give with any questions you may have. We consider this to be a living guide to be updated as new pressing questions arise. We are open to criticism as well. Thank you for reading!

7 thoughts on “An Advocate’s Guidebook for Caregivers of Autistic Kids

  1. As a grandparent of a 3 1/2 year old Autistic child I found this to be freeing. A paradigm shift!!!! The perfect thing. Exactly what’s needed. Thank you. I now begin the search for advice and guidance from Autistic people.

    Liked by 1 person

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