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The Hardest Parts of Autism

Photo by Xia Chen for Unsplash

Aggression, self-injury, and inappropriate behaviors may be what people consider to be the hardest parts of Autism, but these issues aren't Autism--and that's important in knowing how to respond.

Autism is a complex difference in the structure and function of the brain in about 1-2% of humans, at least 1 in 44. These differences lead to some of the most interesting, amazing, and accomplished people in history, but what we are often more made aware of are the challenges associated with being Autistic. For some Autistics, it seems as though they are "more Autistic," but that's the case.

Most of the hardest things that people associate with Autism aren't Autism. They are co-occurring conditions.

What's Autism and what's not?
While this doesn't change the difficulty Autistics experience or the difficulty parents and supporting individuals face in meeting the needs of Autistic people, it's crucial for parents, professionals, and school staff to understand a complete diagnostic picture of a child or adult in order to provide appropriate support. Too many times the assumption of "that's just Autism" is made and the right interventions and supports aren't offered to manage symptoms of conditions that aren't Autism at all.

There are 2 clusters of traits that compose the clinical diagnosis of Autism. They are restricted interests and repetitive behaviors (also referred to by Autistics as specialized interests and stims). This cluster includes an insistence on sameness and sensory differences (both sensitivities to sensory experiences and having a blunted sensory experience--often both exist in the same person for different types of input). The other cluster is social communication and relationship differences. You can view the full criteria here. This is Autism. Though distress is a requirement for diagnosis for any condition, aggression, self-injury, or meltdowns aren't required for diagnosis. They may be used to indicate the level of support needed.

Having a child or adult in your life that is physically aggressive is probably one of the most stressful situations to cope with and address. It can lead to carers and family members feeling hypervigilant, frightened, and isolated. Aggression in an Autistic person can create a cycle of rage, guilt, shame, and rage. Aggression is highly associated with negative outcomes for both Autistics and parents and caregivers. Aggression is not a part of Autism. Studies estimate anywhere from 20%-68% of Autistic children have displayed aggression. We know that symptoms or traits of Autism diminish with time in childhood, and this appears to be the same for aggressive behaviors. It's not the case for all Autistic children, however.

If it's not Autism, what is it?
Causes of aggressive behaviors very. I implore parents and professionals (pediatricians, therapists, naturopaths, teachers, music instructors--everyone working with Autistic children) to do a deep exploration of the whole child to determine what the causes of the behaviors are. I suggest you do not use a functional behavioral analysis but instead use curiosity and a systems approach complete look at what's happening. Autistic children process events and emotions at different rates. An aggressive or emotional outburst might occur hours or days after a trigger event. A functional behavioral assessment looks at antecedents, which may not be observable, the behaviors, and the outcomes to determine motivation or cause. Aggressive episodes in non-autistic children are purposeful. They are not for Autistic children. The outcomes and consequences are incidental.

Anxiety and fear

It's not called the Fight/Flight response for nothing. When an Autistic child is keyed up with anxiety or fear, a response may be aggression. This is not personal and is protective. It may not be appropriate to the situation to others but there is a real reason that the child is responding this way.

To respond to aggression caused by anxiety, seek therapeutic care for anxiety.

Trauma response and PTSD

Don't skip this one because you think your child hasn't experienced trauma. There is every possibility that your child has been a victim of trauma without telling anyone especially if your child is non-speaking or low-verbal.

A common experience for those with trauma or PTSD is aggression. Trauma responses and PTSD both cause reliving of previous experiences and lead to engagement of the fight/flight system. That can turn into lashing out.

How to respond: if communication is a barrier, continue to work on it. Seek therapy with a trauma-informed child practitioner. Medications may also help. Play therapies are available for non-speakers. It's challenging to learn about traumas. Rates of abuse in Autistic children are shockingly high. Usually by people expected to care for them. Be suspicious. Be guarded.

ADHD-linked Rejection Sensitive Dysphoria

Rejection Sensitive Dysphoria (RSD) is not an official part of the criteria of ADHD, but it can be an incredibly disruptive and deeply painful condition. Rates of ADHD in Autistic children may be as high as 80%. RSD manifests as intense emotional pain to perceived rejections--even mild or neutral ones. Some children may have extreme emotional outbursts related to RSD that include aggression and self-harm.

How to respond: tell your child's mental health professional you suspect RSD. Treatment options include therapy and medication.

Being prevented from engaging in stims and rituals

Autistic children and adults use stims (or self-stimulating behaviors) to regulate their bodies and emotions. They also can be highly reliant on rituals as a part of having control and predictability in their lives. Interrupting these stims or rituals can turn an Autistic person's day upside down in an instant. This can lead to aggression in some cases.

How to respond: respect stims and routines and rituals. If something is changing, give lots of warnings and update expectations for your loved one. Expect and anticipate how they are likely to react and front load support.

Physical health issues

Pain can cause us to be able to tolerate much less frustration. You want to rule out physical illness when attempting to address aggressive behaviors. Some physical health issues are any that cause pain or conditions that cause inflammation of the brain such as PANS/PANDAS.

Aggression and IQ
Personally and professionally, I would ask both parents and professionals to ease up on this connection. While there are, of course, Autistics who have intellectual disabilities, there are probably fewer than we believe.

I want to point to non-speaking Autistic children here who have been given access to AAC that works for them (like Spell2Communicate or Rapid Prompting Method or devices). Generally, these children's IQ scores were in the dirt because we aren't very good at understanding the severe motor planning disorder that plagues many Autistic children like my own. Global Apraxia is a topic for another day, but understand this: any test can only test what a child can demonstrate not what they actually know. Global Apraxia is a neurological disorder, but it's a physical disability that goes unrecognized and gets called an intellectual disability. When given access to communication, we learn children who couldn't speak can spell, and read, and are poetic, thoughtful, and insightful. I'll direct you to some blogs or social pages for children I've followed: Alexis's Voice, Niko Boskovic, Ido in Autismland. There are many more. I have seen this in my everyday life with my daughter.

Self-harm is the intentional or impulsive act of inflicting harm on one's self. This can include, hitting oneself, hitting other objects, banging one's head, biting or scratching oneself, hair pulling, or deliberate cutting, burning, and scratching.

Many of the causes may be the same as in aggression, so please see what I covered above: anxiety and fear, trauma response and PTSD, ADHD Rejection Sensitive Dysphoria, interrupting stims and rituals or routines, and physical health issues including pain.

Other causes of self-harm include: attempting to cope with emotional pain by releasing endorphins through physical pain and losing control during a meltdown.

How to respond: Cutting and deliberate self-harm can be mistaken for suicide attempts or gestures. It often isn't, however, Autistics are at a higher risk of suicide. Take your child to a professional to determine this for certain.

Rule out pain or physical illness with a doctor. Be a detective and figure out the source of the self-harm. Direct communication with the child when they are calm is best to get the information you need. Follow up by treating the cause.

Inappropriate Behaviors Content warning for talk of sexual behaviors
Often when inappropriate behaviors are mentioned, they usually refer to removing clothes, self-touch while not in private spaces or everyone's favorite: poop stuff.

These are not core features of Autism or traits of Autism, but they are things that can occur especially in younger Autistic children though it does happen for older children. These are pretty unfun for parents, but they may also unfun for the child.

Removing clothing

Taking off clothing at inappropriate times can be embarrassing for parents, witnesses, and even the child.

Causes of this behavior include being uncomfortable in the clothing, being overheated, having to use the bathroom, having a motor loop where touching the clothing leads to removing it (think of muscle memory for people who have motor planning disorders). It could also be related to Autism for a younger child who hasn't yet learned the social rules about clothing.

For children with motor planning disorders, it may look as though this is something they are in control of, but it may not be. The two core features of motor planning issues are initiating a purposeful motor movement and impulse control.

How to respond: Don't shame a child for this or any action. It's likely to backfire as feeling overly guilty and shameful can lead to self-esteem issues and other unpleasant behaviors. Give a verbal prompt to keep clothing on. Offer to take the child to the restroom to attend to needs. Remind them of the social rules. Where are clothes required? If the problem doesn't go away. There is some clothing options that are very difficult to remove by the wearer.

Self-touch in non-private spaces
Most kids go through a phase of touching or scratching themselves in public. Some kids even take things out of clothing. This could be a one time thing for most kids, but Autistic kids may need more reminders. This could be caused by needing a good scratch, needing a restroom break, a self-soothing action, or just because it feels good.

How to respond: be careful not to shame children for this action. Remind them it's about privacy and not about their actions or body. Ask if they need to use the restroom. Verbally prompt them to stop the action. Remind them to wait until they have privacy or if at home, to go to a private space. If the problem continues or seems to be causing the child distress, it's important to explore the possibility of trauma with a trained professional. Clothing that restricts access may help in the short term.

Touching other children Trigger warning: talk of sexual behaviors in children and general talk about abuse
A lot of kids have an experience of playing doctor or something similar in childhood. This could be a normal part of development, but it could also be a traumatic experience for the children involved. Asking parents questions about sex topics is normal and should be welcome. Inappropriate sexual behaviors are often learned, so if something seems to be more than just simple curiosity, it's time to seek professional advice. Here's a brief overview of what is typical by age and issues to watch for.

When this is a problem: There's a age difference between the children of more than a couple of years. There's coercion, bullying, or force involved. Imitating sex acts. Repeated display of sex organs in public spaces especially in older children. This may not be a sign of trauma in an Autistic child who hasn't caught up on social rules at 7 or so but definitely a red flag to explore at 9 or 10. A preoccupation with sex.

How to respond: first, if you are worried about something, ask a professional. Be aware that if there has been a violation of a child, it may turn into a report to the local child protection authority. That's scary. It also means getting help for the kids involved. Avoiding involvement with professionals may lead to more serious problems for the children involved later.

Poop stuff
Everyone's favorite go-to for the worst scenario--fecal smearing. Fecal smearing behaviors can be simple or complex, in either case, it's unpleasant. For young children and Autistic children of a bit older age, it may be simply putting hands where something feels uncomfortable and coming back with an unexpected surprise. Smearing could be trying to get it off of their hands. This can be the case for older children and adults as well. It's possible, as many assume, that for some children the texture is a positive sensory experience or the movement of sliding hands on. surface without friction is a positive sensory experience. It can also be due to discomfort from constipation or fissures. It can be from other bowel health issues like prolapse. It can be an impulse. It can be a motor loop. It can also be something a child might think is funny. What's funnier than poop? It can be fear of toilets or fear of the process of potty training due to negative experiences. Fecal smearing can also be primal such as a way to keep others away from them or their space. This is more likely in older individuals.

How to respond: Don't freak out. It's already done. At this point, you want to be in clean up mode both physically and emotionally. A child may feel embarrassed and uncomfortable. Imagine not being able to stop yourself from doing something that feels gross and then having to deal with someone being angry with you for it. So, clean up, build up the child with unconditional positive regard. Have a chat about why it's not ideal. Rule out medical causes with the pediatrician. If it's a regular occurrence, there is specialized clothing available that is difficult to remove for the wearer that can help prevent this.

Some of the hardest parts of Autism are due to other causes. While we always want to address issues in a neurodivergent affirming way, we also need to find and address the root cause of the issues without lumping it into Autism. We will have more success when we are able to see the Autistic child as a whole person. For all of these issues, remember, the child or adult engaging in these actions isn't malicious and may not have the control we often assume they have. Assume good intentions from your child or assume that they lacked control in these cases.

What are the hardest parts of Autism for Autistic people? Often, it's other people who fail to accept Autistic people as they are and fail to believe they are doing the best they can. I'll cover this question in future blogs as well as more of the hardest parts of Autism.

Please subscribe to the blog for more information and insight on Autism, and for more in-depth looks at the hardest parts of Autism.

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