Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts


 Birthday parties. Let's talk about it.


Parties, gatherings, events, picnics, etc., where there will be lots of people, noise/music, activity, chatter/laughing, and hidden, unspoken rules for "appropriate" behavior.

The event may even be outdoors, which brings a whole host of safety concerns.

Or, the event could be near a body of water (pool party), which definitely adds even more safety concerns.


For parents with Autistic children, or another disability, do you just not go??? Is that the way to do this? How do you get a child through elementary school without ever attending a birthday party?? These days, kids have to invite the whole class. So in an average school year, your child may receive several birthday invitations, to loud, active, parties full of running, screaming kids, hopped up on sugar and soda.

Before we jump into what to do, let's back up a bit and describe the challenges: Why are birthday parties sometimes so not fun, and so very hard

Birthday parties/large gatherings are (often) loud, full of junk food/ice cream/candy/cake, full of people, tantalizing presents, music or entertainment, and the expectation to socialize ("You kids go play"). All of this can combine for quite the sensory nightmare.

Your Autistic child may find the event overstimulating, scary, uncomfortable, or painful (overstimulation that one cannot leave can be painful). Your child also may be unable to tell you any of that, which leaves demonstrating the discomfort through their behavior.

I have seen this up close many times, both "on the clock" and off the clock. I've been at kids birthday parties and seen that girl or boy seriously struggling and having an awful time, or attended birthday events with clients to provide support during the party. 

I think its critical to reset expectations and have a clear understanding of just how scary parties can be for Autistic children or adolescents (I'm not mentioning adults because, typically, adults with disabilities are not forced to attend events they seem not to enjoy, the way small children are).


The questions below should be carefully considered based on your child's age, temperament, sensory profile, and support needs, with strategies in place in case the party experience goes badly. Have a plan, then have a backup plan, and don't go it alone. Bring at least 1 other adult with you, or if you are hosting the event, assign helpers among family ands friends who know what to do and will quickly jump in if your child is having a hard time.


Things to Consider:

Do you have to attend/throw the party? No really, think about that. What would happen if you just...didn't go? Or what would happen if your child didn't have a 4th birthday party? I'm pretty sure the earth would still keep spinning. Sometimes, the level of support that would be needed as well as the needed accommodations aren't feasible. In that case, is it better to force your child through something they are unlikely to enjoy, or to just skip it? I'm not saying forever, and this could even be a case by case decision. Small party at a neighbor's home? Sure. Huge community pool party with 6 clowns, a DJ, and group party games? Maybe not.


- Don't try to stay the whole time, instead play it by ear. For some children, they aren't excited about the cake (feeding issues are common with Autism). They don't care about the social games or group activities. They don't yet have the ability to wait, so they won't understand why they can't start ripping into set aside food or activities (and may not understand why they can't open someone else's gifts). What will YOUR child do at the party that they find fun, entertaining, and is safe? Think about that, before you take them to a 2 hour birthday party.

- Understand that vigilant supervision may be needed. This does mean dropping your child off may not be a safe option (as the party host will be super busy), and if you stay with your child, you may need to keep them in eyesight at all times. It isn't unusual for my clients to 100% "veer off from the group" during parties, only to be found sometime later upstairs in a closet, or trying to access YouTube on the family laptop, or casually digging through someone's refrigerator. These can be very embarrassing moments, that could easily be prevented by keeping a close eye on your child, especially if the party or event will be held outdoors.

- Speaking of embarrassing, there is nothing embarrassing about accommodations or supports. If you are taking your child to a party or event where they can't wear their noise canceling headphones, or freely STIM (family members, sadly, can be very judgmental about stimmy kids at birthday parties)  without being treated poorly, that may not be the kind of event you want to attend. Again, parties are overstimulating for many Autistics. So it makes sense that they will do MORE of what helps them calm or regulate in response to being at the party. In other words, if most of the kids are quietly playing Candyland, but your child is in a separate room happily squealing and jumping, while chewing on a straw, will this be a problem for other people at the party? If so, I don't think your child is the problem.

- Take preferred foods, toys, and leisure items with you. Please do not expect that your child who eats 3 foods at home, will magically attend a birthday party and chow down on Cheetos, cake, and pizza. If they won't eat it at home, they likely won't eat it at the party. Also, don't withhold stim items or comfort toys because the child is in public, and other people will see. Those favored items may help keep your child calm and comfortable, in a chaotic and loud setting. On that note, it can be helpful to bring items your child may grab, snatch, or steal, if they see it in public. For example, I worked with a boy once who loved to suck on pencils. If he was out somewhere and saw a pencil, he would try to grab it and put it in his mouth. So in that situation, I'd recommend bringing oral sensory items with you so the child doesn't need to hunt throughout someone else's home for something to satisfy that chewing desire. Think about things like this in advance, and plan accordingly.

- The biggest tip, and the one I see cause parents the most pain and distress, is this: Please don't expect your child to be a different person socially, just because you're at a birthday party. If your child is not very social at home, they likely won't be very social with 23 other kids present. In fact, they may exhibit new behaviors you usually don't see at home (such as pushing, swatting at, or running off to get away from the other kids). This can be very hard for parents to watch. So can bullying and stigma, such as if your child DOES want to join the play, and the other kids are being mean or cruel to your child. Remember that earlier tip about close supervision? It's very important to watch how your child interacts with the other children, so you can stop any bullying or rudeness in its tracks, and so you can monitor when your child's social battery is "full". Most of my clients fill up that social battery very fast.....maybe 15-25 minutes of social interaction, and they're done. And that is OKAY. Not all children want to "Go play" with their peers for hours and hours. Observe your child, redirect them to solo play or maybe a calming activity as needed, and when they seem to be all done with being around so many people, its time to head for the door so the event can end on a high note. Don't be ashamed or embarrassed to say "S/He's ready to go now. Thanks for inviting us, bye guys!". 



I hope the largest theme coming across in this post is that large events/birthday parties aren't necessarily about you, as the parent. They aren't about the party host, the games, the clown, catching up with friends, hanging out, etc. They are about helping your child be successful, in what is likely a highly overstimulating scenario.

It is important to provide your child with the support and tools they need to engage with the event, to endure the event (again, consider if it would be best not to go if they seem to just be "enduring" parties), or to excel at the event. Whether the bar is set at engagement, endurance, or excelling, will depend on your child. 
And don't lose hope and feel defeated if right now, you are at an endurance level. That doesn't mean things will always be that way! As your child grows and matures, and most importantly as they develop more skills and abilities, they may begin to enjoy parties. Maybe even, to have fun at parties.
Give it time, and be patient. Both with your child, and with yourself.





*Recommended Resources & Resources:




Ghanouni, P., & Quirke, S. (2022). Resilience and Coping Strategies in Adults with Autism Spectrum Disorder. Journal of autism and developmental disorders, 1–12. 






 



I have been presenting/speaking, writing, and training on the topic of ABA Reform/anti-ABA sentiments for some time now. I have spent time engaging in intentional community and dialogue with people who disagree with ABA, and even have traumatic experiences from therapy services (some which really should never have been called “ABA”), as well as doing the work daily in my sphere of influence to train up/mentor/coach supervisees on this topic. Lots of listening, closing my mouth, being open to changing my own mind, being open to critique and feedback, and letting people tell their own stories.

 

I’m not alone in this. I know many ABA clinicians and providers who are also moving away from defensiveness and being closed off to criticism or shutting down Autistic voices because they disagree with ABA. I know people personally who have completely changed the way they practice, and I have mentors in this field that I look up to who have helped model for me the way forward, towards a more compassionate and respectful ABA. There is still lots of work to be done, and I know many providers committed to doing that work, every day, across all their clients.

 

However—

 

I get lots of comments, questions, and emails, from anti-ABA people who want me to do more. They want me to close up shop, rip up my certification, terminate all my client contracts, and find something else to do. They want ABA to just go away. Reform isn’t enough, changed mindsets isn’t enough, and listening to the Autistic community isn’t enough.

 

To that, I want to openly and publicly say: I respect your point of view, and I’m not here to tell people what to think. You have formed an opinion and are 100% convinced it is correct.  You believe ABA is conversion therapy, it is abuse, it is terrible, and that any ABA provider must therefore be terrible. You aren’t interested in dialogue or collaboration, you want ABA providers to shut up, and go away.

 

I hear you.

 

But I’m committed to change. For myself, for those professionals within my sphere of influence, for the clients and the client families I support and work with every day, and for the field in general, as far as my own advocacy and activism will allow. I speak out regularly about better ways to do ABA, issues with this field/industry, and the need to better support clinicians, and better train Technicians. I feel strongly about ALL of these issues.

 

To Autistics I say: keep speaking up and keep speaking out. Yes, you will find that trying to dialogue with some ABA providers or company owners will be an exercise in futility. But, there are those of us out here who WILL listen. Who won’t shut you down, who are willing and interested in engaging in respectful communication and truly want to learn. We are here.

 

You may not want to speak to us, you may not want to dialogue with us, and you may not want us to continue supporting individuals and families, but again: We are here. We will remain here, and we will commit to growth, own up to our mistakes, and stop acting like we know it all. We don’t know all. No one knows all.

 

So for those who ARE interested in learning, growing, communication, collaboration, and improving the quality and soul of ABA services: We are here.

 

Let’s work together.

 


** Recommended Reading:

What is ABA/Can it be Reformed?

Toward ABA Reform

A Perspective on Todays ABA

https://www.iloveaba.com/2020/11/aba-haters-pt-ii.html

https://www.iloveaba.com/2021/08/trauma-informed-aba.html

https://www.iloveaba.com/2018/03/normalization.html

ABA Reform Movement podcast episode

List of ABA Facebook Groups

Toward Trauma Informed Applications of Behavior Analysis 

What is Trauma Informed ABA podcast episode

Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2018). Compassionate Care in Behavior Analytic Treatment: Can Outcomes be Enhanced by Attending to Relationships with Caregivers?. Behavior analysis in practice12(3)

Compassionate Care in ABA


 Autism Awareness 2022.


It's April again.


If you haven't read my thoughts on moving from awareness to action, see HERE.


Advocate. Support. Inform. Educate. Accept. But please do more than just be aware.







 

"...They discovered that many of the challenges they face daily are not "symptoms" of their Autism, but hardships imposed by a society that refuses to make basic accommodations for people with cognitive disabilities as it does for people with physical disabilities such as blindness and deafness"

"There seemed to be so little information available about raising kids on the spectrum that didn't view Autism as the principal problem to be surmounted, rather than tackling the practical barriers that stood in the way of fulfilling their potential"

'NeuroTribes' by Steve Silberman




Autism is a disability, and a gift. It is a vast spectrum, where the challenges and unique talents are dispersed unevenly, uniquely, and entirely heterogeneously from one person to the next.

For this very reason, it can be insanely difficult to find appropriate resources, therapies/interventions, medication protocols, schools & college programs, or job placements "for" Autistics. What works for one Autistic, will be 100% nonhelpful for a different Autistic. An amazing private school program that serves highly verbal and autonomous Autistic children, would likely be a terrible fit for Autistic children who do not communicate by speaking, are not toilet trained, and engage in self-harming behaviors. Oh, and also the level of support that is successful THIS year, could be too much or not enough come next year.

This is not paint-by-numbers. There is no magic solution.

We must do the hard work, every day, to provide compassionate, individualized, and dignity respecting care and support to the Autistic children, teens, and adults in our life.

No shortcuts.

"Ableism is perhaps the single most important disability-related keyword that exists besides the term 'disability' itself. It represents one of the biggest obstacles that people with disabilities face, and yet the word is not very well-known outside the disability community. If you don’t know this word already, it is a must-have in your vocabulary."

"What is Ableism & How can you be Anti-Ableist?" by Jill Feder




Ableism can be defined as various forms of negative biases and discrimination that people can face because of their actual or presumed disability


It is important to check our own biases, misconceptions, and assumptions when it comes to the individuals we support, teach, train, and work with.

None of us are exempt from this conversation, because even if you may say "Well, I certainly don't have any negative biases or perceptions about Autism", what do you when you confront them at work? Or in the school where you teach? Or if you are raising an Autistic child, hear from your own family members? How do you respond, or DO you respond?


Here are some great examples of ways in which disabled children, adolescents, and adults may face Ableism in their day-to-day life. 

Seeing the problem (awareness), is the 1st step towards standing up to address it or call it out when it happens:

Patronizing language or Infantilizing Autistic adults

"Obsessions/Fixations" instead of "Special Interests"

Person- first language when Identity -first language is preferred

Functioning labels (i.e. low functioning)

Approaching your clients with a "Fix it" mentality, vs a "Support & Assist" mentality

Assuming non-vocal/non-speaking means "cognitive impairment"

Only speaking of Autism as a burden

Over-prescribing therapy or intervention with the goal of Normalization

Teaching "passing" or "masking", instead of person-focused intervention

Talk of "recovery" or a "cure"


Source: Avoiding Ableist language in Autism research



"Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:

  1. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day)."

Source-  www.CDC.gov


It is part of the diagnostic criteria for Autism to struggle with Rigidity.

What is Rigidity? It is an inflexibility, an inability to tolerate change or unexpected events, to varying levels of difficulty.

This is something many of my clients struggle with, and it can be quite life impacting in negative ways. Issues around rigidity can affect the school day, relationships/social ties, life at home, transitions, community integration, and vocation/employment success (for older clients).


Some examples can include:

- Difficulty tolerating a change in teacher

-Difficulty staying calm if something breaks, loses power, or the battery dies

-Difficulty staying calm if mom or dad drive past Wal-Mart but we don't go inside 

-Insistence on the same routine every day, Monday-Sunday

-Refusal to change eating habits, clothing choices, etc., from one day to the next

-Difficulty sleeping if traveling, away from home, or the bedtime routine is different


As rigidity is a core characteristic of Autism, treating or intervening on it must be approached carefully. The goal should not be to turn an inflexible person into a flexible person. The goal should be to help the learner adapt to an ever-changing world that will NOT stay constant, and increase the learners coping skills to accept what they cannot control. 


To a degree, most of us are creatures of habit. We buy a certain brand of makeup, we brush our teeth a certain way, we park in the same place when we go to work, we always sit in the 2nd row for our college lectures, etc. It isn't inherently a problem to like sameness and predictability in your life.

But.


This does become a problem when the reaction to the routine being disrupted, is explosion, aggression, self-harming, etc. For example, I have specific restaurants where I order the same thing every time I go. If I went one day and that item wasn't available, I'd be dissapointed, annoyed... I might even leave and go eat somewhere else. But I would not become a danger to myself or others, and I would not perseverate on that annoyance for hours or days.

So how do we help our clients, students, and loved ones calmly accept life's inevitable changes?

ABA provides many, many strategies to teach flexibility and tolerance to change. Let's discuss a few:


  1. What are we teaching instead? This should be priority #1, it is truly that important. We cannot just rip away established patterns and rituals, we have to first identify the replacement behavior(s). This could include teaching the ability to request ("I wanted the red cup"), to wait ("We will go to Wal-Mart, but I'm stopping at Wendy's FIRST"), to self-manage anger and disappointment ("I can see you are angry. Let's do our deep breaths, okay?"), and/or to problem solve ("Oh no, your tablet's battery died. How do we fix that?").
  2. Do we have rule out for underlying issues? It is not uncommon that Autism co-occurs with other diagnoses. Is the learner just "rigid", or are they OCD? Or struggling with an undiagnosed Anxiety disorder? 
  3. Intentionally, and systematically, introduce change. I work with so many families who try to skirt this issue by avoiding changing things in their child's environment, giving in to the rituals, even driving out of the way in the community to avoid passing places that will trigger the child. I know this seems like the easy way to manage this problem, but in reality it will make things worse. It is almost presenting a lie to the learner to act as if nothing in their environment need ever change. That just isn't real life. We need to help the learner by introducing small, intentional changes (start super small) and then helping them tolerate that change. Speaking of tolerate....
  4. Help the learner develop a "plan of action" when they are triggered. This will be highly specific to the individual learner, so I cannot give a recipe for this. What is most important is to utilize function based intervention to teach a strategy to the child for de-escalation. For example: When there will be a substitute teacher at school, inform the learner. (If possible) Talk about how they feel about this change. Empathize with their distress, and do not minimize it. Engage in action steps such as pacing, squeezing a stress ball, humming, and deep breathing with closed eyes. Remind the learner of the things they can control/the things that are unchanged. For example: "I know you're angry that Mr. Walker is not here today. That's disappointing. We can go in the hallway and take a break, and when we come back in you let me know if we're doing our writing journal or sight word folder first. Okay?".
  5. In Step # 4 I referenced "Empathy". I know it can be frustrating and stressful when your client/child/student explodes over a moved seat, a different bowl at breakfast, or a broken toy. You might think "WHAT IS THE BIG DEAL?!". Well, do you like change? If we're honest, most of us do not like unexpected, unrequested change. It makes us angry, and we feel annoyed. So even if you can't fully relate to the size of the explosion, you can relate to the feeling, right? That "relating" is empathy. Put yourself in the learners shoes, and treat them the way you would want to be treated if you were that upset and agitated.




**More resources below:


Rigid Eating Habits

Food Selectivity

Inflexible Thinking

Use Inflexibility to Teach Flexibility

SuperFlex Curriculum

Intentionally Changing Routines

Poljac E, Hoofs V, Princen MM, Poljac E. Understanding Behavioural Rigidity in Autism Spectrum Conditions: The Role of Intentional Control. J Autism Dev Disord. 2017 Mar;47(3):714-727. 



 


*Recommended Resources:

Helping your ASD child cope with COVID

Strategies for supporting learning at home

Homeschooling special needs children

Mastering Homeschooling

Podcast Episode: "Take Off the Cape"


During this global pandemic, schools have been as impacted as everyone else when it comes to figuring out a New Normal. 

The most recent stats indicate that globally, there are 1.2 billion children learning outside of the classroom due to school closures (source: We Forum) . E-learning has increased dramatically, with parents and caregivers now finding themselves thrust into the role of "Home Education Assistant".  

I have multiple clients who are learning at home this year, and both the parents and the children are struggling to adjust to this unanticipated change. 


For the children, it may be hard to understand why they aren't at school, why the regular routine has been so disrupted, and why they have to sit and learn at a computer all of a sudden.

For the parents, this is an added stressor during an already challenging year, it is hard to navigate a school at home schedule while also working from home (or returning to work on-site), and for parents of ASD children there are added unique challenges to help the child benefit from online learning.


Very few of the clients I serve are able to sit and learn through a device/computer screen for an entire school day. That just isn't happening. So what we are doing instead is helping the caregivers in the home learn how best to support their child's school day with this new format. Especially since none of us really know for sure when schools will be "back to normal".


Below are some tips I share with my client families, I hope they are helpful for you and your children:


  • Tip #1 is THE MOST important tip: Talk to your treatment team. By "treatment team", I mean the ABA team/case BCBA, Speech Therapist, Teacher, Counselor, etc. The best person to ask about your child's learning is a professional who already knows and works with your child. Seriously, I have had so many meetings this year with client teachers, and the teachers were all so understanding, accommodating, and willing to work together, because this year is hard for all of us. You will have no idea how much the online school day can be modified until you ask.

  • A daily schedule will be your BFF. It will be nearly impossible to adjust to the demands of school at home without a consistent schedule in place. Create a schedule based on when your child needs to log-on/be active in class vs. when they can work on assignments off-screen/off-camera. Be sure to include breaks (Pleeeeeease don't expect your child to sit at a computer screen all day with 0 breaks. That won't end well), meal times, reinforcement time/play, and calming or sensory activities as needed. Just like the rest of us, your child is probably highly stressed from the challenges of 2020. Though they may be unable to communicate that, just depending on ability level.

  • Seek help if you are physically unable to supervise your child's online learning. I have some client families where both parents are working from home right now. It is tough, but they are able to adjust their day so at least one parent is always monitoring the child's learning. I have other client families where this is not at all possible. Every household is different. Consider having a neighbor, grandparent, older sibling, or family friend monitor your child during the school day. For some families, "monitoring" may be all that is needed. For other families, see the next tip.....

  • DO understand that for some children, sitting at a laptop and attending for more than a few seconds at a time will not be possible. It won't. You are not a bad parent if this is the case. You have not failed, and you should not beat yourself up. This simply means your child will need a high level of support to benefit from schooling at home. I have some clients in this scenario, and it does mean that an adult must sit with the child and help them participate in online school. But guess what? For these types of kids, a 6- hour school day is not the goal. A 4- hour school day isn't even the goal. We work on helping the child participate as much as possible, and then we take breaks. Then we try some more. Then we take breaks....get the picture? Which leads me to my last tip....

  • Let's get real. And I mean, really real. We are in the midst of a pandemic. Families are struggling mentally, emotionally, financially, etc. Your child with ASD may not understand what is going on, and why all of a sudden you are acting like a teacher. Stress levels, anxiety, and depression, are sky-high for many people. You have to assess your capacity as a parent to do school at home. It truly is not for everyone. And that's OK! Please re-read tip #1. Talk to the school. Talk to your child's teacher. Explain your situation, and discuss the barriers to teaching your child at home. See what strategies or modifications the school can make. You might be surprised how many options you have that you just don't know about. You are not Superman or Superwoman, and are under no requirement to be perfect. Do the best you can, in the surreal circumstances we all find ourselves in right now. Best of luck to you!


 


*If you need some context to why this is such an important topic to discuss, please see any of the links below:

https://www.salon.com/2020/07/06/young-black-autistic-and-imprisoned-matthew-rushins-story-is-sadly-not-unique/

https://www.bbc.com/news/world-us-canada-36859305

https://www.nbcnews.com/news/us-news/north-miami-officer-who-shot-unarmed-caregiver-man-autism-found-n1018616

https://www.miamiherald.com/news/local/article236523038.html

https://www.washingtonpost.com/local/remember-neli-latson-the-black-teen-with-autism-who-seemed-suspicious-sitting-outside-a-library-ten-years-after-his-arrest-he-still-isnt-fully-free/2020/06/10/53565cec-ab39-11ea-a9d9-a81c1a491c52_story.html

https://www.npr.org/sections/codeswitch/2014/08/23/342688183/for-parents-of-young-black-men-with-autism-extra-fear-about-police

https://www.spectrumnews.org/features/deep-dive/police-need-training-interact-people-spectrum/


According to a 2017 study (Drexel, Autism Institute), about 1 in 5 Autistic teens will be stopped and questioned by a police officer before they are 21 years old.

The Matthew Rushin story is one of horrible injustice and tragedy, and reveals a concerning urgency to  prepare brown and black Autistic children, teens, and adults, for police interaction. Sadly, this isn't as simple as holding up the smiling photo of the community helper and saying "Point to the police officer". No, that really isn't going to cut it.

Just like teaching any other skill, a great starting place would be to set a terminal goal. Is the goal for the individual to remain calm if stopped by the police? To answer questions respectfully? To be able to explain their diagnosis, and any behaviors that an officer might deem "suspicious"? Is the goal to avoid engaging in behaviors that may attract police attention (although realistically, how pragmatic is this?)? What would the terminal goal look like, and then once that goal has been identified-- work backwards.

It is also important to teach at the ability level of the individual, understanding that language, cognitive, or social impairments may mean visual supports are helpful, practice/role play is helpful, and other evidence based strategies such as video modeling may be needed. For some individuals who require daily supervision and support, perhaps it is unlikely they will encounter a police offer without an adult/teacher/parent present. In that case, maybe staying calm, keeping hands visible, and not walking off would be appropriate behaviors to increase. 

For other individuals who do not require daily supervision, live alone, and have independence, police interaction training may need to be much more in-depth and sophisticated as a known adult/caregiver likely won't be present. In this instance, self-advocacy and the ability to stay still and calm while being questioned would be important.

What I see of the most importance, however, is not skipping this conversation. Will it be pleasant? No. Police brutality is not a pleasant thing to talk about. Will it be easy? No. Most non-Autistic people don't understand police brutality, and I'd imagine that it's no different for Autistics. Will it make police seem fearful or scary? Possibly. But we also teach individuals street safety, kitchen safety, water/pool safety, etc. I see this as being a similar skill. Police are a part of our society, and it is unrealistic to expect certain populations within our society to have a magical 'free pass' from potential unpleasant police interaction.

If your child or client was outside unsupervised and an officer walked up and said "Tell me your name", what would happen? What about if they got pulled over by a police officer while driving? Or needed to approach a police officer to request help, or ask for directions?

When I think about this issue, I think about particular black and brown clients I've worked with as an ABA provider:

-A teen who tends to invade personal space and talk very closely to people's faces. 

-Another teen who shouts and hops up and down when he is confused or agitated.

-A child (She looks like a teen, but she's not. She's only 9) who covers her ears when agitated and stops talking.

-Multiple children who have full body repetitive movements where they may excitedly pace, run back and forth, or flail their arms out. 

If I try to imagine any of them in a scenario with a police officer, I am unclear how their mannerisms would be interpreted ..... as aggression? disrespect? Does that officer know what Autism is? Might the officer incorrectly assume drug or alcohol use, instead of "Developmental Disability"? I really don't know. 

And it is exactly because we don't know how the police interaction might be misconstrued, that we need to prepare our clients, students, and loved ones/children as best we can.

Ultimately, injustice is hard to predict. But as parents, educators, ABA providers, etc., while we cannot predict future negative police interaction, we can do what we can to prepare for that possibility. At least start with a conversation, and helping your child/client distinguish between typical police behavior and when they are being violated, harmed, or are in danger. 



**Resources (please share!) **

'Correlates of Police Involvement among Adolescents and Adults with ASD'

'An Exploration of Law Enforcement Training Needs with ASD'

'Using Virtual Reality to Train Police Interaction

"Meet the Police" A National Autism Association Safety Initiative 

'Autism, Law Enforcement, & First Responder Training

'Behavioral Issues Boost Risk of Police Run-Ins'

Autism in Black organization

The Color of Autism Foundation

Mapping Police Violence website

Black Autistic Lives Matter






Fist things first: WHY is diagnosis important??


If you are seeing red flags or concerning behavior in your child, is it absolutely essential that you pursue a formal evaluation?


...Well, no.


But, the benefits of obtaining a diagnosis of Autism can include access to services/treatment/an IEP, access to specific funding or disability resources or support, possible reduction of parental/familial stress or anxiety about the child's behaviors or differences, and an increased understanding of your child's unique needs and motivations. Basically, the sooner you know what is causing the red flags you are observing, the sooner you can DO something about it.



Many Autistic adults report having gone through life feeling different, odd, or struggling socially, and express wishing they had known much earlier in life that they weren't "wrong", while everyone else was "right". It can be extremely helpful for a person to know how their brain works (and why), so even if as a parent you aren't concerned if your child could be Autistic, your child may want to know one day.




TIPS

· Ask questions about alllllll the things! Make a list before you even arrive, just to make sure you get all your concerns out when you are face to face with the clinician. This is the time to express your concerns and get answers

· Don’t over or under report. What I mean is, describe what typically happens as truthfully as possible. It will be very clear to the clinician if you are glossing over serious concerns, or if you are minimizing strengths

· Make sure your child (and you!) are in a good place for the appointment: fed, rested, calm, etc. While many parents bring along a tablet to keep their child entertained on the way to the appointment, keep in mind that tablet will have to be removed at some point. It may be a good idea to bring a less powerful reinforcer so you don’t push your child into a full tantrum right as the appointment starts

· Avoid jumping in to help/guide your child, or directing your child to attend to the assessor (e.g. “C’mon Ally, push the red car!”). I know, it’s hard to just sit and watch your child perform poorly. But that is exactly what the assessor needs to see. Don’t worry, there will be parts where the assessor needs your input.

· Don’t expect this whole process to be wrapped up in one 2-hour appointment. Proper assessment takes time, you may encounter waiting lists, and most likely there will be more than one office visit required.



WHAT TO EXPECT

Regardless of the diagnostic tool used, there are certain commonalities you can expect. To name a few:

· The “majority example”. If your child exhibits a certain behavior 5% of the time, and a different behavior the other 95% of the time, the assessor will focus on what they do 95% of the time.

· Difficulty leaving/separating from the caregiver, even if that person is in the same room. This is very common, don’t feel embarrassed if your child clings to you and refuses to interact with anyone else.

· “Who is this child?”. By this I mean it is very common for the child to behave differently during assessment than what the parent is used to seeing. If the child babbles at home, they may be silent during the appointment. If the child bites and pinches at home, they may be sweet as pie during the appointment. It is also important to understand that the assessor must make decisions based on what they are seeing. This is why the evaluator will likely have you complete multiple checklists or forms, so they can compare what you typically see against the snapshot of the child they are seeing.

· Super, super short attending to tasks (e.g. child stays seated for .5 seconds). VERY common. Don’t become fearful that the assessment will be ruined, or full of errors, because your child just flits from one task to another or will not participate in any tasks. This is actually part of what the assessor needs to see, and it provides valuable information about functioning.

· Don’t expect to get to the end of the appointment and hear the assessor say “Welp, he’s Autistic”. ALL of the data, scores, and observations must be compiled and analyzed, and this process takes time. While it is very okay to ask the evaluator their initial impressions, please give the evaluator time to properly review all of the data before confirming any diagnosis.



NEXT STEPS

· After the diagnostic appointment, it will likely be a few weeks (or longer) until a follow-up appointment. The follow-up appointment is where the evaluator reviews the results with you and will go in depth to discuss recommendations.

· The formal diagnostic report will be long, detailed, and jargony. Kind of like reading a technical manual upside down. Be prepared to ask questions, and then ask more questions, until you actually understand the clinician’s report.

· If your child is not diagnosed, sometimes this can mean additional diagnostic tools are recommended, the child may currently be on the cusp and another evaluation is recommended for the following year, or there may be other explanations for the red flags besides Autism.

· If your child is diagnosed, this just means that in most cases they now become eligible for a myriad of services. It does NOT mean anyone can predict their future, tell you they will never (fill in the blank), or tell you that (fill in the blank) will always be a struggle.

· Please be prepared for more delays. In a perfect world, families would move seamlessly from diagnosis to treatment. Unfortunately, in our actual world, there are far more people needing services than providers offering services. There may be a wait to access various therapies, get into your school districts Autism program, apply for SSI, etc.




*Recommended Reading: After the Diagnosis

*Here is a parent perspective of the diagnosis appointment


"Early intervention" usually brings up images of toddlers or pre-schoolers completing puzzles, learning to put on a jacket, or labeling photos. In its truest sense, early intervention is better described as "intervening early". When thought of that way, the concept (and corresponding strategies) can be applied at any age to intervene on challenges or issues that are preventing your child from being as successful as they could be.


I often get questions from parents or caregivers about behavior issues, such as sleep routine ("How do I get him to sleep in his own bed?"), feeding challenges ("How do I get her to eat more than creamed corn?"), or issues with rigidity ("If he can't sit in the red chair, he screams"). The best response to these questions, is not to allow the problem behavior to get embedded in the first place. It's probably the least helpful response, but arguably the most accurate response.
 As soon as you see a problem behavior has been established, seek help or further education right then and there. ~Don't wait.~
 I repeat, don't wait and think the behavior will just go away magically on it's own. The same recommendation is true for skill deficits. If there is a particular skill your child is struggling with, seek help or further education to help them learn the skill. Don't wait and think the skill will magically appear in it's own time. 

Just ask any ABA professional and they will tell you that untangling a behavior knot that has been in place for weeks, months, or even years, is difficult. It may seem like problem behaviors pop up overnight, but they rarely leave overnight. Meaning that it typically takes hard work and effort to reduce or replace challenging behaviors.

The hard truth for many families is quality treatment just isn't accessible. It could be a funding issue, there could be a lack of local providers, or maybe other environmental barriers to accessing available treatment are in place. I meet families of older children all the time who haven't even heard of ABA treatment. You can't request a therapy you don't know exists.

Yes, accessing intensive and quality treatment is always going to be the ideal option. But for those who cannot, it's helpful to know that there are still options available to you and your child. What is most important is to have expectations for your child, set realistic goals (such as teaching your child to use a spoon), and then work diligently toward each goal. Don't overload both you and the child by tackling multiple things at once, as this is a marathon and not a sprint.


See below for other tips:


  1. Look into funding sources in your local area, and see what your insurance will cover. The local school system typically has resources available through special education that most families just don't know about. Ask if there is a parent advocate/liaison to help you navigate all the treatment options.
  2. Consider pursuing intensive treatment or consultation, and then following through on your own. Nowadays, many parents attend ABA conferences, enroll in behavior analytic coursework, or even pursue the RBT credential just to learn about the science. You can also pursue free training events that may be offered at local colleges, ABA clinics, or research institutions. The more you can learn about Autism, behavior, and ABA, the better equipped you will be to handle challenging behaviors. You can also work intensively (and briefly if needed) with a BCBA and then follow through with their recommendations on your own.
  3. Learn as much as you can from your child's teachers. Special education teachers have so much knowledge and experience creating accommodations and breaking down instructional material for children who learn in unique ways. I would suggest regularly reaching out to the teacher to ask questions about issues at home, to pick their brain for ideas, and actually observing in the classroom to get ideas about what can be replicated at home. For example: nearly all my clients follow a daily schedule in the school setting, but not at home. Why?? The same benefits that are achieved at school from having a consistent daily routine, can easily be achieved at home by using the same technique.
  4. Look for activities/groups/classes that welcome children with disabilities. I cannot emphasize enough the importance of peer models, and making sure your child spends time around typically developing peers. There are many fun kid activities like karate, gymnastics, or swim, that do offer accommodations so individuals with special needs can participate. Beyond the actual skill that is being taught, your child is learning to learn within a group, to follow an authority figure, to socialize/be appropriate around other kids, and most importantly they are integrating into their local community.
  5. Avoid the establishment of strict rituals or routines. Now this one is easier said than done, but it's super important. Most of the older clients I work with have particular challenging behaviors that have been allowed to persist for years and years. The longer a behavior is embedded, often the more difficult the intervention will be. So how do you know the difference between a simple preference ("I like to sit in the green chair at dinner") vs. a rigid ritual ("I MUST sit in the green chair at dinner")? Look at what happens when the ritual is interrupted, or cannot occur....does intense problem behavior follow? If so, then just close your eyes and imagine what the behavior will look like in 5 years, 10 years, and 15 years. If you're not okay with how the behavior will likely grow over time, then it's time to intervene.
  6. Intentionally set aside time for active engagement with your child. If you're wondering what in the world "active engagement" means, it basically means to focus on extending an interaction for as long as you can. Get down on the child's level, and read a book to your child, paint together, bounce them on a huge yoga ball, or line up cars together. The actual activity doesn't matter much, what is more important is that both you and the child are socializing, and not you socializing with the child and receiving no socialization in return. Talking is teaching! By talking to your child, engaging them in an activity, and socializing with them 1:1, you are teaching many skills at once. Point to objects together, play with a toy, sing songs and dance, laugh and make eye contact, tickle the child, model language use ("c-u-p"), etc.
  7. Have household rules. Schools have rules, right? So does any workplace, the library, the grocery store, even the slide at the playground has rules concerning how to use it. But does your child have rules at home? Are there certain things they cannot do? Do they know what the rules are? You will help your child grow into independence and maturity immensely, if you set expectations of their behavior and follow through with consequences when those expectations are not met.




*More resources below for ways to intervene early, and help your child be as successful as they can as they age. Remember, just because a resource may state "ages 0-3" that does NOT mean you can't use the same general strategy with your older child. The point is to intervene early as much as you can, teaching important life skills and reducing problem behaviors as soon as they appear. 















For a variety of reasons (some preference based, some due to circumstances) many parents today are choosing to homeschool their ASD child.

Thanks to technology, if you are a parent considering taking the often scary step into not just being Mom or Dad, but also Teacher, then there are websites, apps, and all sorts of tools that can help you. Which is great.

So is homeschooling all great, ALL the time? Hmmmm.....not really.
Just like any educator, every day will not be sunshine and roses. However there's a huge difference between an occasional rough day, and ending each homeschooling lesson sobbing at your kitchen table. Let's avoid that 2nd scenario, when at all possible.

Many of my clients are homeschooled by one or both parents, so I get an upfront view of the difficulties these parents have when it comes to teaching their own children.

This post isn't about answering the question "to homeschool, or not to homeschool", as that's a decision parents should make. But, I do hope to give some helpful tips for making the homeschool process a bit easier and less frustrating.



Moving from Amateur to Master

“Adapt” is now your favorite word
 If you have spent any amount of time inside a Special Education classroom, or speaking with a Special Education teacher, then you should know that Adaptation is the name of the game. Most purchasable curriculum does allow for  customization (some more than others), but if your child is not progressing well with the curriculum/can't keep up, or isn't understanding the material, the beauty of homeschooling is that you can adapt the material to fit the child. I know some parents who don't even teach certain skills/certain subjects because in the grand scheme of things it just isn't functional for their child. When I say "adapt", I mean the materials, the tests/quizzes, the textbooks, the lesson plans, EVERYTHING! What you are teaching should be functional for your child, and presented in a manner they find interesting, and clear to understand. If it isn't, then you have some adapting to do.
Reinforcement is key
 Life is about reinforcement. The quicker you accept that, the easier teaching will become. Using a combination of visual/auditory supports, and tangible rewards, embed frequent, powerful, doses of reinforcement into teaching. Ideally, you want your child to be a willing and compliant learner who enjoys learning, right? Well, the way to get there is by breaking tasks down (see the previous point) and wrapping up demands in a thick layer of reinforcement.
Knowledge is your strongest weapon
 Knowledge of subjects? Nope. I mean knowledge of your child. If you have a teaching background that's great, but many parents who choose to homeschool do not. But you definitely do have knowledge of your child :-) Use what you know about your child (temperament, motivation, personality, etc.) to design instruction. I know of a family where the mom created lesson plans focused around the movie "Zootopia", as that was a special interest for her daughter. So they used "Zootopia" to learn about history...math...science....etc. Use what you know about your own child to your advantage.
“Prompting” & “Teaching” are not synonymous
 See my Prompting post if you are unfamiliar with this word. Here is a common error I see many parents make when homeschooling: child responds incorrectly, parent delivers prompt, child responds incorrectly, parent delivers prompt...repeat 500 times. The problem with confusing a prompt with teaching, is "What is the child learning"?? A prompt is always intended to be lessened, or fully removed, so we can reach independence. If you stop prompting your child, and they suddenly have no idea what to do, then you have been over- prompting. Which will slow down the rate of acquisition (it will take longer for the child to learn).
Masters seek help when they need it!
 The most important tip is not to try and do everything on your own. Educators working for school systems know when to reach out for assistance, and so should educators working around their kitchen table. If your child has significant behavior issues, attention problems, or their academic performance is far below their age (a 7 year old working on Kindergarten level assignments) then you need some professional assistance to design intervention. Reach out to an educator, the support available through the homeschooling curriculum/website, or a qualified BCBA so they can help you learn the best ways to teach your child.





*Resources:

If you aren't already familiar with TPT (Teachers Pay Teachers) it's an awesome site full of resources made by and for educators

"The Value of Homeschooling"

"Homeschooling Your Child with Autism Spectrum Disorder"
Today's QOTD isn't quite a direct inspirational quote, it's more of a helpful -and important- resource.

From Dr. Mary Barbera, here is a short and sweet vlog on teaching non-vocal individuals to communicate distress due to pain:




For parents and professionals alike, this hits home. I have worked with many kids who had recurrent medical issues or problems, such as frequent colds (which can bring an unpleasant head fog and nose irritation), bowel/indigestion issues, acid reflux, ear infections with painful blockage, etc.

Can you imagine for a sec, experiencing some kind of painful event and not having the means to communicate that to anyone? Especially if you are a child, and cannot just run to CVS and pick up some medication to make yourself feel better. And we wonder why some of our clients get so frustrated or angry??

Taking this beyond physical pain for just a sec, in my own life when I am in a funk/sad, furious, or anxious about something, it can manifest in my body as physical symptoms. Ever heard of "butterflies in your stomach"? Or "a stress -anger headache"? WOO, I've definitely had more than a few of those.
But unlike many of my clients, I have the ability to communicate I feel like being left alone. Or, I can obtain and then ingest medicine. Or, I can choose to postpone tasks until I feel better (i.e. "Guess I'll be finishing up that report tomorrow...").


The ability to communicate not just thoughts & wants, but private events (feelings, moods, sensations, etc.) is SO critical, regardless of age or ability. I consider it a life skill.



Activity schedules are amazing tools that can benefit a household in many different ways:


  1. Ease transitions
  2. Promote independence/Self-management/Leisure skills
  3. Teach play skills (particularly independent play)
  4. Prompt behavior without a therapist/adult being present
  5. Decrease unsupervised "free time", which is often filled with problem behaviors
  6. Teach following a schedule/teach routines
  7. Signifies when reinforcement is available
  8. Teach choice making

I love, love, love activity schedules. A common recommendation in my behavior plans is to "keep the child engaged". Most of my clients exhibit their worst problem behaviors outside of therapy sessions and school. Why is that? 
It's often because the home environment does not provide the same level of routine and structure as school and therapy sessions. For most of my clients, down time is not their friend. Down time is usually filled with behaviors that Mom or Dad do not want to see increase, like eating carpet lint, dumping out the dog's food bowl, or sitting on top of the refrigerator.

If you are working with an ABA team, ask them if this is something your child could benefit from. If you don't have the support of a team, then keep reading and I'll explain how you can make one yourself.


Firstly, parents often say to me "Is this really necessary? Will he/she always need to have a photo schedule to follow? Won't this be inappropriate when he/she is a teen or adult?". My response to that question is to inquire if the parent ever uses some type of planner (including digital ones) to organize or structure their days. Roughly 80% of the time they tell me they do. I then explain that a planner is a glorified activity schedule. Don't believe me? Okay:

Activity schedule with photos----->Written schedule with no photos----->To Do list----->Organizer/Planner/Scheduling app



Now that you know even adults use a version of an activity schedule, how do you know if your household could benefit from one? If any of these scenarios ring true for you, consider implementing activity schedules:
  1. Afterschool/on the weekends/after therapy sessions the child's problem behavior skyrockets
  2. Breaks from school/3 day holiday weekends are just the WORST, and your child seems to amp up their problem behaviors day by day
  3. The child must be constantly supervised or they will break, climb, or destroy something in the home
  4. The child has no leisure skills, and lacks the ability to just "go play" (these words mean nothing to them)
  5. Telling the child "stay in here" also means nothing, and they tend to just wander all over the house
  6. Mom or Dad cannot do laundry, take a phone call, respond to emails, have company over, or cook dinner unless someone else is home to keep the child entertained/busy
  7. Toys sit around gathering dust, because your child only interacts with them for a few seconds before losing interest
  8. Other children in the home rarely get their share of parent attention or time 
  9. The child will only sit and attend to electronics (TV, iPod, tablet, etc.). Books, toys, puzzles....nope.


Are you starting to love the idea of an activity schedule yet? :-)


Now for the fun part: Making one! *Puh-lease do not buy an activity schedule online. For one, it will not be individualized to your child. For two, it's super easy to make

Decide which part of the day you want to introduce this visual support 
(I suggest picking the part of the day that is currently the MOST difficult to keep your child entertained)

Decide what you want the child to do instead of wandering around, being glued to an electronic, or engaging in problem behavior 
(Puzzle? Read? String beads? Sensory tub?)

Create a visual display of each step. The schedule can show one activity or multiple activities (On a piece of cardboard or thick paper, tape a photo of each separate activity in the order they should be completed)

Consider the use of a timer and reinforcement 
(Timers help ease transitions, and reinforcement is behavior superglue)
Prepare the area
(Have all materials organized and nearby, tape the schedule to the wall)

Teach your child to follow the schedule 
(You will need to prompt and reinforce)






* More information:

Book: Activity Schedules for Children with Autism-Teaching Independent Behavior 

Research: Use of activity schedule to promote independent performance of individuals with Autism and other Intellectual Disabilities



Maladaptive - Incomplete, inadequate, or faulty adaptation; unsuitably adapted or adapting poorly


I had a colleague once who brought to my attention that our supervisees seemed to love to throw around the word "maladaptive" in their reports. It had almost become like a buzzword for saying "inappropriate". Like, "maladaptive tantrum behavior" or "maladaptive social functioning". My colleague's response to this was genius, IMO, and changed the way I view this word: Maladaptive to who?? 
As in, the client's tantrums are maladaptive...to who? The client's toy throwing is maladaptive...to who??? Certainly not the client.

See, the word maladaptive implies that there is something defective, or wrong, about the behavior. However, to the person engaging in the behavior it is very much serving a purpose and meeting a need.

So if I am 4- year- old little Tara and I cannot readily communicate, I now have to come up with some other way to get what I want. Oh I know, how about screaming? If screaming leads to adult attention, followed by accessing things I want, then how exactly is my screaming maladaptive?

Before throwing around buzz words, or using overly technical language to sound impressive, try thinking through what you really mean to say when describing behavior.

The irony is I think it's extremely "adaptive" to come up with a method to be understood. ;-)
Kids are so much smarter than we give them credit for, whether or not we like what they choose to do.

*Suggested Reading: "The Hidden Curriculum for Understanding Unstated Rules in Social Situations for Adolescents and Young Adults"


The hidden curriculum can be defined as those invisible and unspoken rules of  society/community that we are all expected to follow, and often face negative reactions for failing to follow.

Examples? Sure:

*During checkout, the cashier may ask if you found everything ok. It's a way of being polite. They do not expect you to say "No, I couldn't find milk, eggs, flour, or lemons. Come help me find them"

*It's fine if a toddler on a plane is loudly singing the ABC song to himself. If he's still loudly singing 10 minutes later, his parents will start getting some very angry looks from other passengers 


*Do not ever get onto an elevator and stand with your back to the door, directly facing the other people on the elevator


*When you see a "free samples" sign, it is fine to take one. It is much less fine to take 5

*Any look towards another person that exceeds a few seconds is considered "staring". People may make an odd face at you if you don't break off the stare when they catch you



And on, and on, and on.

Teaching play skills? Sure, we have a program for that. How about language? Not a problem. Toileting? Of course. But the difficulty with teaching hidden curriculum is in its very unclear shades of gray. If typically developing adults have a hard time navigating invisible social waters, then how well do you think a child with Autism will do?

I think another difficulty with teaching in this invisible domain of social skills, is trying to do so within a structured therapy session. Social skills don't always fit into neat boxes, or a jam-packed therapy session from 2-4. To work on these areas of gray we need to go OUT THERE.
Out there is simply into the child's community, where they live, work, play, or attend school. It is often through being out and about with my clients that I see areas of deficit I was previously unaware of, and think to myself "Ooooo, we need to work on that".

Yet another difficulty with teaching in this invisible domain is that the wrong answer is not always obvious. Just think of someone you know who is a bit abrasive or loud. At social gatherings, you can see other people giving each other the side eye, obsessively checking their watch, or clearly saying lies to leave a conversation with that abrasive or loud person. But does the person seem to notice those cues? Not always, no. Unless someone plainly says "Hey look: you are shouting and spraying spit on my shirt, and you're also kind of ignorant and boring. I don't want to talk to you anymore", that person may never truly understand how others perceive them. And it's unlikely that will happen, because it would be extremely rude to tell someone that! So the person does not get the blunt feedback they need, because to give that blunt feedback would make the other person seem abrasive and rude.


Social skills are difficult. Like, Jenga difficult.





So what can be done?


  • Realize that this invisible area of social development will not magically descend upon your child like fairy dust. It will likely need to be taught, very intentionally, and with lots of generalization/real life examples.
  • Don't expect it to be easy, or simple. It won't be.
  • As much as you can, expose your child to same age peers. I spend a lot of time at work watching kids interact, and the results can be hilarious. Kids say things adults would never say, but that kids with poor social skills need to hear. Like: "Oh my GOSH you already said that like 4 times! I don't care".
  • Evidence based strategies such as video modeling and social strips/social stories can be particularly helpful to break down complex social skill instruction, particularly if the learner has the communicative and cognitive ability to follow a story.
  • Stop being so nice to your child. I'm not saying be a jerk, but the honest feedback your child gets on the playground won't exactly be dipped in sugar first. Practice giving in the moment feedback when your child interrupts someone, stands too close, or smells like they need a shower.
  • If you are already receiving ABA therapy services, ask if social groups are an option.
  • Make sure your child understands that social rules are a complicated matter. Almost every social rule has an "except when...." caveat. This is not a concept that will be helped by black and white thinking; flexible thinking will be key.


For more information about Hidden Curriculum, look for the publications of Brenda Smith Myles



Copyright T. Meadows 2011. All original content on this blog is protected by copyright. Powered by Blogger.
Back to Top