What Not to Say: 
things parents of children with autism hate to hear 

Things Parents of Children with Autism Hate to Hear

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Parents of children with autism frequently encounter statements, comments and questions that might be well intentioned but are dismissive, come across as judgmental, frustrating to hear and invalidating to either the parent's experience or the experience of the child themselves. 

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Children with autism spectrum disorder (ASD) are not bad, nor are they naughty or immoral. Likewise, autism itself does not mean something is wrong with the child. There is nothing easy or simple about autism. Autism is complex, nuanced and can at times be difficult to understand. For the majority of us we would be considered neurotypical, meaning that our brains and nervous systems work in a typical way compared to others as a whole. The brains and nervous systems of children with autism are wired and organized differently than those who would be considered neurotypical. Any time someone encounters something or someone different than they are, it is only natural to see that thing or that person through the same lens they view themselves. However, this does not give someone permission not to learn and increase their awareness. In fact any time we encounter something, and especially someone, who is different than we are, we should always do the hard work of seeking to understand their experience and to be accommodating to their needs. 

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As parents of children with autism, it can be very frustrating to hear others make assumptions and judgments about our child, about autism, and about ourselves as parents, and to solicit advice without ever taking the time to move out of their comfort zone, look past their own selves and experience, and seek to understand the experience of our child and of us as parents.

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Most statements made to parents can be categorized into the following categories: parental blame and judgment, dismissive and minimizing, unsolicited advice or quick fixes, spiritualizing, and stereotyping. Well intentioned or not, and in hopes of increasing awareness of those with autism and their family, the following are things to avoid...things parents of children with autism hate hearing (and why):

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Dismissive and Minimizing

• "Everybody is a little autistic."

       No; not everybody is autistic. Autism is a neurodevelopmental disorder that involves how           the brain and nervous system grows, develops and is organized in a way that is different

       than the typical person. Yes, we are all wired in different ways, but those with autism think

       differently, feel differently, behave differently, and experience the world differently than

       their peers. 

• "She'll grow out of it."

        Autism is a neurodevelopmental condition that carries with it a lifelong neurological

       difference. Though children with autism do not grow out of this condition, early

       intervention and supports can drastically help a child develop skills necessary to navigate

       a world unfamiliar and unpredictable to them. 

• "He won't be autistic forever."

        Brain research tells us that many with autism can learn and adapt with therapy, supports

       and certain interventions. Autism is not a disease or a phase that can be grown out of,

       but rather, it is a neurological condition where their underlying neurobiology does not

       change. Saying a child won't be autistic forever, furthermore, diminishes the child's identity

       and suggests that their natural neurology is flawed and needs fixed.

• "Wow! You're so brave!"

        Parents of any child do not view parenting as brave any more than waking up and

       brushing our teeth is brave. It is what we do. Just like you and me, parents of a child with

       autism have ups and downs, twists and turns, bumps and bruises. There are times life

       feels hard, scary and overwhelming, but to a parent their child is precious, important and

       someone who they love deeply. 

• "How do you do it?"

         This statement implies to a parent that their child is a burden to survive. It implies that

        parenting a child with autism is a tragedy. To a parent of a child with autism their child is

        beautiful just as much as any other parent sees their child. Parents of a children with

        autism love their children, would do anything for their children and do not see their child

        as anything but good, beautiful and worthy of love.  

• "I don't know how you have so much patience with her."

         Each child is different and needs different support. This statement implies that parents

        choose patience as though there is something notable or superior that allows them to

        choose patience, as opposed to choosing patience out of necessity, because it is

        required. Parents of a children with autism are not different or more morally superior to

        those around them. Patience is a requirement, necessary to provide proper support to

        our children. 

• "She doesn't need fixed. She's perfect the way she is."

         We agree, but nobody said our child needs fixed. By saying our child doesn't need fixed

        implies that you think "fixing" is possible or even a thing. It frames autism as a defect that

        needs cured and dismisses the child's identity. Though we agree that our child is perfect

        the way they are, this dismisses the struggles the child with autism faces on a daily basis

        and will continue to face all throughout their childhood.

• "That's just a kid being a kid."

         Children with autism face different struggles on an everyday basis than those with of

        neurotypical children. When this is said, the message the parent receives is that they are

        overreacting to the child's behavior or way of being and dismisses the child's daily

        struggles. When this is said regarding misbehavior or preemptively redirecting a child,

        those who are not parents of children with neurodevelopmental disorders do not realize

        how our children either have difficulty with impulsivity, self-control or recognizing danger

        and when to stop. Children with neurodevelopmental disorders typically do not process

        dopamine (the neurochemical that allows us to feel pleasure and reward) the way

        neurotypical children do, leading to impulsivity, a lack of self-control, disinhibition and

        knowing when and how to to stop.

• "He'll eat when he wants to."

        No, he won't; not necessarily, anyway. Children with neurodevelopmental disorders, since

       their nervous systems are wired and organized differently, do not necessarily receive,

       register or respond to biological signals alerting them to eat, or that they feel hungry

       altogether. Time is registered differently. Sensation is registered differently. At times

       children with neurodevelopmental disorders can hyperfocus or hyperfixate on an interest

       or hobby, making it difficult to break away and respond to bodily sensation. 

• "She doesn't look autistic." Or "He seems normal to me."

        Autism is neurological in origin, referring to how neurons, which are not visible on our

       outside body, connect. Autism is not detectable just by looking at someone. Many with

       autism look like you and me. Many aspects of autism are experienced inwardly with much

       difficulty to those with autism, and it is usually only when problems arise in emotional

       processing, sensory processing and social-relational processing that autism can be seen

       visibly. 

• "Once he starts talking, you'll wish he never started." Or "Maybe he'll talk someday."

        Unless you have a child with autism, it may be hard for you to grasp the heartache and

       grief a parent works through as they process the loss of possibly never hearing their child

       tell them "I love you," or never holding a reciprocal conversation with their child, or hearing

       their child play with peers, or fearing to forever advocate for their child because their

       child is unable to advocate for themselves. Some with autism are nonverbal and some

       can be highly verbal. Services like speech therapy have proven to be very helpful. Parents

       of children with autism learn that communication is also more than sound. You learn to

       pick up on pattern, behavior, facial expression, eye contact, gesture amongst others in

       order to "communicate."

• "Girls can't have autism."

        Girls can have autism, too. Historically speaking, autism research has focused primarily on

       boys, and as a result, boys are 4 times more likely to have an autism diagnosis than girls.

       When research is done primarily by men, men look for men things. Because of social

       norms, women with autism tend to go unnoticed and undiagnosed, or even

       misdiagnosed. Traditionally, women are given an expectation to be more social and are

       tasked with more social standards than men, leaving women with autism to "mask," a

       term to describe suppressing natural autistic traits and blending in to avoid rejection,

       criticism and being socially accepted. 

• When someone you are explaining your child's autism to laughs in amusement because they think the behaviors are cute.

        Individuals with autism are routinely described as quirky and their behaviors as cute, as

       autism can be experienced by others as unfiltered authenticity. Though we are glad you

       think our child is cute, you are overlooking and dismiss the intense internal tension

       experienced within our child with autism. What you see is cute and quirky, a child with

       autism experiences overwhelming frustration, gripping sense of powerlessness and a

       deep sense of shame. 

Parental Blame and Judgment

• "He needs a good (smack in the mouth/spanking/butt whooping."

        As parents of children with autism, we are not being soft. We understand our children

       need correction, but correction does not equate to punishment, especially physical harm

       acted on an innocent child whose nervous system is dysregulated. Correction means to

       teach, not to punish. We do not see our children as bad, but rather lacking the internal
       skills to deal effectively with what they are often externally (and at times, internally)

       experiencing. As parents, we work to co-regulate our child's nervous system first in order

       to properly teach, guide and coach how to effectively handle the conflict if ever it arises

       again.

• ​"You're spoiling him."

        What you may see as spoiling or giving in may actually just be us providing an

       accommodation for a sensory need, a neurological need, or a communication need. As

       with any parent, we believe our child is deserving of acceptance, empathy

       and unconditional love and support. My child may be different than yours and my child

       may need different support than yours does. My child's temporal lobe may not receive,

       register or respond to auditory stimuli like your child's does and may just need

       headphones, whereas your child does not. 

• "I would never allow my kids to do that."

        Every child is different, every parent is different, and every situation or circumstance is

       different. It may be easy for you to not allow your child to do something, but that might

       be because you have a neurotypical child whose nervous system works in a very typically

       organized way. Unless you have a child whose nervous system works entirely different

       than the world they live in, you do not know what you would allow and what you wouldn't

       allow. 

• "I'm sorry" upon hearing a child has autism

        Frankly put, no need to feel sorry. To say "sorry" implies that our children are less than, not

       good enough, too hard, and that we should feel bad that our children have autism.

       Saying "I'm sorry" diminishes our child's identity.

• Any mention of:

  • red dye​

  • Tylenol

  • whether the mother breastfed or didn't breastfeed (for any reason)

  • complications during pregnancy

  • decisions in utero

  • vaccines

         While neuroscientists understand and agree that our epigenetics do play a factor in

         who we become, there is no conclusive evidence to date identifying a single cause

         linking to autism. Furthermore, mothers (and women in general) receive so much

         criticism and judgment from our society, as unrealistic expectations are placed on them

         while simultaneously being blamed for conditions outside of their control. Mothers (dads,

         too) carry so much guilt from not getting it, missing it, not getting it right, messing up,

         misunderstanding, should'ves, would'ves and I-wish-I-could's, losing patience from

         absolute pure exhaustion, and simply wanting to help their child but not knowing

         how. Mothers often already feel too much, yet feel not enough. When you speak of non-

         scientifically proven and peer reviewed research regarding cause, the message

         received implicitly by the parent is that of blame and judgment that somehow we, the

         parent, caused autism in our child.

Spiritualizing 

• "I'm praying for his healing."

        No need to. Simply put. Children with autism are not defective or ill. There is nothing wrong

       per se with a child with autism. Neuronally, connections within their brain and nervous

       system are wired and organized differently. Neurons may connect more strongly or they

       may have a weak connection. There may be connections present that would not

       normally be connected. Or there may just be miswires and misfires. The child may feel

       strongly about something or will feel little to nothing about something. They may give

       intense eye contact or avoid eye contact altogether. This does not mean anything is

       wrong with them. This does mean, however, that a child will experience challenges that

       you may not experience, and that the child may need extra supports. Skills and supports.

       Not healing.

• "God chose you because He knew you were strong enough."

        Parents of children with autism experience constant feelings of powerlessness and

       helplessness. Not always knowing what your child needs in the moment. Feeling guilty

       seeing your child struggle and not knowing how to help. Hearing your child punish

       themselves because they think "maybe if I beat it out of myself, it will go away," or

       because they don't feel deserving of living. What maybe you see as strong, parents of

       children with autism experience as inadequacy; we don't necessarily feel strong; in fact

       they feel weak and incapable. Saying to someone that God chose them because of how

       strong they are dismisses their feelings and their experience entirely. 

• "God won't give you what you can't handle."

        (See above)

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Unsolicited Advice or Quick Fixes

• "Have you tried...?"

       Probably! If it is scientifically proven? Yes; parents of children with autism have most likely

       tried it. If it is not rooted in scientific research that is peer reviewed and it was on the front

       page of your pop psychology magazine? Probably! Any promise of relief for our child,

       we've most likely have tried it. Instead, assume we attend therapy; ask how therapy is

       going. If a parent is not involved in therapy, assume a bad experience. Listen. Validate.

       Empathize. Offer a supportive ear. Still avoid suggesting going bad. Therapy is expensive,

       time consuming and exhausting trying to find a good therapist who cares, is

       knowledgeable and possesses the skills need to best support the child and the family. 

• "You need to discipline her more." Or "Just discipline him."​

        This statement is seeking a quick fix to a long term challenge. Asking questions, being

       curious of a child's experience, having acceptance for their differences, demonstrating

       empathy for a child struggling and exhibit patience for sometimes hours on end are all

       interpersonal skills that come out of doing the hard work of relationships and are required

       for parenting children with not just neurodevelopmental disorders but all children. 

• "You should take time for yourself."

        This is easier said than done. Raising a neurodivergent child with autism or any other

       neurodevelopmental disorder is challenging for many reasons. Depending on the

       level of support needs, a child may require intense round-the-clock care. Scheduling

       appointments. Remembering appointments. Attending appointments. Medications.

       Meltdowns. Sensory overload. Remembering to eat. Brushing teeth, taking a shower,

       textures of certain foods, sounds, smells, certain clothes that can all carry sensory

       differences that can trigger dysregulation. Sometimes it is easier to NOT take time for

       ourselves, as taking time for ourselves requires parents to not only remember and

       communicate but to also teach someone else what to look for and what to do in

       moments that will inevitably catch a caretaker off guard. 

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Stereotyping

• The "R" word 

       The "R" word refers to the use of "mental retardation," as well as its other

       forms, to describe individuals with intellectual or developmental disabilities and is a slur

       in the mental health community. Although the "R" word was originally introduced as a

       medical term in 1961, its use now expresses attitudes of devaluation of actual human

       beings. It has become a derogatory label meant to dehumanize and make an

       individual feel less than.

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• The "short bus"                                                                                                                        Similarly, the use of the term "short bus" has historically been derogatory in nature as well.

       Its use is highly offensive as it stereotypes individuals with special needs or special

       education needs to be different and inferior than the general education population. The

       more appropriate terminology may depend on one's region, state or location but is as

       follows: special education transportation, special needs transportation or specialized

       transportation. Special education transportation provides transportation

       accommodation under the federal Individuals with Disabilities Education Act (IDEA) and

       may include children with Autism Spectrum Disorder (ASD), ADHD,

       sensory/behavioral/emotional support needs, as well as others. Each child, however, no

       matter the disability or level of support needs required, is important, valued and should

       be seen for the individual they are, not defined for who they are not. 

• "I bet he is like some genius, isn't he?" Or "Like in the movie Rain Man?" Or "Does he have special skills?"

        Not every child with ASD is a genius or gifted with a high IQ. Movies like Rain Man might

       highlight one aspect of a gifted individual, but Autism Spectrum Disorder is a spectrum,

       not to be defined by IQ but rather defined as a disorder in how the brain and nervous

       system works, grows, develops and is organized. To perpetuate the stereotype is to

       overlook what it means to be autistic. Furthermore, it dismisses and ignores others with

       autism who are not male, look white and are not isolated savants. 

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What to Do/Say Differently

1. Get to Know the Parent’s Experience.

      Most parents feel unheard, overlooked and misunderstood. One of the easiest ways for parents

      to feel seen and heard is to simply try to get to know us. Seek to understand our experience. If

      you don’t know much about autism, ask to understand. Be careful not to ask to respond, but ask

      to understand. You can say something like:

• “I recognize I don’t know as much about autism as I should or as I would like; will you tell me more about autism?”

• “Do you mind helping me understand more about autism? I want to understand better.”

• “Tell me more about how autism impacts (your child)?”

• “Tell me what it’s like being a parent to a child with autism?”

   2. Listen and Believe Them.

      Too often parents feel invalidated, as though their experience doesn’t matter or what they feel

      shouldn’t be felt. If they tell you that they feel scared/sad/mad/exhausted, empathize, validate

      their emotion and choose to believe them.

• “That feels hard; I think I’d feel exhausted, too.”

• “I can see why you feel angry; I’d feel angry too if (someone ignored my child/my doctor didn’t listen/no one seems to care, etc.).”

• “It’s hard having to juggle all that you do.”

• “Parenting is hard enough. Parenting a child with autism can be doubly hard,” and you can then list off the reasons the parent gave you…the reasons why.

• “I wish more people believed you and took the time to get to know you. I believe you.”

   3. Get to Know their Child.

      Every parent desires for others to get to know their kid and embrace them. We long for others to

      see our children the way we see them. We hurt when we see our kids rejected, not included or

      misjudged.

      Children with autism aren’t scary. Sometimes, the emotional dysregulation can feel scary,

      especially if we the adult don’t know what to do, and the behavioral responses can be scary

      when the child is emotionally dysregulated. But the child themselves is not scary. In fact, the

      child can be really super cool to get to know. One of the cool things about us as youth pastors (I

      know; I used to be one) is that we tend to seek after those no one else does.

      Enter their world. Be curious about their experience. Most are verbal. Ask what they like and take a

      genuine interest in what they find interesting. Get down on their level. See what they see. The

      colors. The angles. The textures. The contours. The shapes. The patterns. Do what they do. Feel

      what they feel. Experience what they experience. Much of their world is navigating a sensory-rich

      world that can feel confusing, overwhelming and yet captivating and irresistible all at the same

      time. When a child with autism is nonverbal, you can learn their movements and their sounds.

      Children with autism who are nonverbal communicate also…they just might not have words to

      describe what they experience.

    4. Find a need and meet it (regarding the child)

       A child with autism is going to struggle in two primary areas:

• Social communication

• Persistent, repetitive patterns of behavior, interests or activities (otherwise known as stimming)

      When it comes to social communication, a child with autism struggles in relationships and social

      settings because they have a hard time understanding others and all things social. Usually, this i

      is because they have a hard time understanding themselves. If you have difficulty

      understanding yourself, you will have difficulty understanding others, as “you” are the framework

      for understanding “other.” They feel, and they want connection. Sometimes, though, connection

      to a child with autism looks different. Take the lead in conversations. They may appear shy,

      reserved or uninterested. More often than not, they are interested and trying harder than

      everybody else.

      When it comes to persistent and repetitive patterns, a child with autism is seeking to soothe a

      dysregulated nervous system. Children with autism have difficulty filtering out sensory input. One

      of the essential tasks of the brain is to filter out irrelevant sensory information: touch/feel,

      auditory/sound, smells, tastes, sights/visual, visceral, etc. in order for safety, survival and

      efficiency. When we ask a child with autism to listen and pay attention, we have to ask, “Which

      one of the multitude of sensory pieces of information are we expecting our child to pay

      attention to?” The other difficulty regarding sensory input has to do with recognizing patterns.

      Another essential task of the brain is to recognize patterns in order to best predict and dictate

      how to best keep ourselves safe, manage everyday life and be efficient in doing so. For a child

      with autism life can feel unpredictable, scary and confusing. To them, people, relationships, all

      things social and even themselves feels confusing and unpredictable.

      Because of these two factors, a child with autism will seek out to soothe and tranquilize their       

      nervous system in the form of self-regulation, or “stimming.” Stimming enables the child to focus

      on something intently that is usually rhythmic in nature, so that they can tune out

      overstimulating sensory input. By doing the same thing over and over in a way the child can

      control, the child is creating an environment that feels controlled, predictable and even familiar

      in an otherwise chaotic, random and unpredictable world.

   5. Find a need and meet it (regarding the parent)

      For most parents of neurotypical children asking what they need or how we can help is

      welcomed. However, for many parents of special needs children to answer is difficult for us to

      answer because we don’t want to feel like a burden, and it adds even more mental effort that

      doesn’t feel worth it.

      Instead, find a practical need and meet it. Ask to come over and spend time with their child in

      their home to better get to know the child with the parent. Tell them you want to commit to

      once a week bringing over a dinner for them…and do it. Be consistent. The more you get to know        the parents, the child and the family situation, the more you will be able to identify practical   

      needs that can be met.  

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