Call For New Volunteers
If you have been following us since the beginning, you’ve watched our organization grow from a single person project to a small nonprofit in just one short year! We are looking to expand our team of volunteers with both virtual and in person opportunities.
If you are interested in learning more about our volunteer opportunities, please use this link: https://forms.gle/xwBzToZnungGftLq9 to fill out an interest form. We have a wide range of openings, ranging from small to large scale commitments and plenty of hybrid/virtual opportunities!
Submission: Tanya Lee
Why Young Adults With Disabilities Should Start a Career in Business
Young adults with disabilities often experience uncertainties in choosing their career paths and job market opportunities. Many countries, including the United States, have yet to create disability-friendly workplaces. However, there has been some effort in recent years to advance and empower people living with disabilities. This article explains how you can develop your business career if you’re a young adult with a disability,
Get a Business Degree
A business degree is essential and equips you with the knowledge and skills to run a business. When enrolling in the degree program, consider lucrative options, such as economics, business management, marketing, e-commerce, and business administration. After earning the degree, you can opt for an online MBA program to advance your knowledge and prepare you to become a business administrator, manager, or operations manager. Fortunately, an online MBA gives you the flexibility and convenience of learning online conveniently while juggling other personal responsibilities.
Find an Internship
Internships are essential because they give you first-hand experience in the work environment. It also allows students with disabilities to learn about organizations that accommodate disabled people. To get an internship, you can check with the Workforce Recruitment Program at the Office of Disability Employment Policy, which offers referral programs connecting college students with disabilities with internships. The American Association of People with Disabilities also offers paid internship programs for college students and graduates with disabilities.
Get Mentorship
Besides internships, seeking mentorship with experienced business people is crucial. A mentor helps you improve your confidence and hard and soft skills by providing guidance and advice. A mentor can also help you build a professional network, which is crucial for your business and career growth. Additionally, some mentors have experience with disabilities, making them a better fit for students with disabilities.
Look for Your First Job
Getting a job is challenging for people with disabilities. When applying for your first job in Ypsilanti, MI, consider inclusive employers with an equitable working environment. Polish your documents by tailoring every resume and cover letter to the job you’re applying for. You can contact your school’s career services department for help writing your resume and acquiring interview skills.
Additionally, several platforms, such as LinkedIn, allow you to create professional networks that may help you land your first job. When creating your LinkedIn profile, ensure you’ve included a professional photo and your profile is complete. Keep your posts specific and positive, and respond respectfully, politely, and in a timely manner to inquiries.
Leverage the Gig Economy
One of the primary barriers for people with disabilities is on-site jobs. To overcome this, you can embrace the gig economy and freelance your business skills. You can also start a business. and run it remotely. Fortunately, several assistive technologies, such as text-to-speech tools, help you run your business effectively.
The Best Time to Start a Career in Business is Now
With the right resources, education, and skills, young adults with disabilities can excel in their business careers. If you're interested in learning about resources available to those with autism in Ypsilanti, MI, reach out to Autism Advocacy and Education.
This Post was Submitted to AAE by Tanya Lee with Ability Village
Personal: Autism and Trauma
Growing up autistic, whether or not you have a diagnosis, is traumatic. People with autism often over internalize or externalize our emotions due to communication differences making it difficult to communicate our needs to neurotypicals. Research suggests that the possible reasons for this is either due to increased exposure to traumatic events and/or the differences in processing leading to increased perception of trauma. It is likely a combination of these two factors.
Autistic people have more traumatic experiences and adverse childhood experiences than the neurotypical population. The intersectionality of other marginalized identities adds infinite layers to the trauma from discrimination. Being autistic, especially as a child, opens the person up to increased manipulation and discrimination, which can lead to trauma symptoms in adulthood.
Because autistic brains process information differently than neurotypical brains, the experiences of trauma are also processed differently. As mentioned earlier, autistic people either over internalize or over externalize their emotions and struggle with emotional regulation due to overwhelming sensory information. Over internalization can look like depression, anxiety, and other mood disorders. Over externalization can look like anger outbursts, aggression, and other conduct disorders. Both of these are trauma responses and should be treated as such.
As of today, there is no specific trauma therapy developed for people with autism. I have experienced a multitude of traumatic experiences myself, especially related to relationships, so I have tried several different therapy modalities but with limited success. The overwhelming research for therapeutic methods is done in limited populations that often exclude autistic people from research to create uniformity of their data.
Processing trauma with autism can look similar to how neurotypicals process trauma. Some people with autism will benefit from talk therapies like CBT, or medication like Zoloft. However, autistics and their professionals need to look for ways to include the autism factor in the treatment plan. Using sensory regulation to process trauma is one of the best ways to heal the body’s experience, and studying a hyper-fixation can provide a brain break from processing traumatic events during session.
Newly Diagnosed: Unmasking
Masking is a term created by the autistic community to describe the experience of covering up our symptoms and pretending to be neurotypical. Whether due to safety or ableism, we learned as children that acting autistic was not acceptable in our specific environment. This can make it difficult to get a diagnosis later in life if you masked enough as a child to miss diagnosis.
I was diagnosed with autism right before the COVID-19 pandemic, and I’ve spent most of the duration of the pandemic learning how to unmask. This was a long process that I’m still working through, because I am uncovering things about myself that have been pushed down for decades. Growing up my only goal was to fit in with my peers and make it through school unnoticed and untargeted. Once I was isolated from my peers, I had the chance to get to know myself.
The process of unmasking myself started with accepting my diagnosis and all the emotions that came from being diagnosed late. I felt relief at knowing I wasn’t crazy my entire childhood, but I also felt frustration that I was missed by so many different professionals. These emotions were overwhelming at first, and I had to work through them before I could continue with this process.
Getting my diagnosis allowed me to learn more about how my brain works and has given me the language necessary to explain my experiences. I learned about stimming and sensory regulation, but felt unsure about starting to explore these areas. The autistic community has been nothing but accepting towards me, but my internalized ableism held me back on creating the environment I need.
To start the unmasking process, I used my previous experience with meditation to tune myself into my body and find where I felt uncomfortable. This awareness allowed me to identify my sensory needs that were not being met. I tried different types of stimming to regulate until I found what worked best for me. The pandemic ended up allowing me to explore this part of my identity without the fear of outside judgment. Now that things are starting to open up, I’m learning how to apply what I’ve learned about myself to the outside world.
If you are self-diagnosed or seeking a professional diagnosis, start trying to identify your sensory needs and what kinds of stimming helps you the best. If/when you meet with a doctor for an evaluation, they’ll ask you what kinds of things help you manage your autism symptoms, and being able to define that will help you get that diagnosis. If you don’t want or can’t get a diagnosis, you can still regulate yourself the way you need to! It is becoming increasingly acceptable to have stimming behaviors in public, but you can start with just at home if you are new to this process.
Confidence is something you might struggle with at the beginning of unmasking, remember that having symptoms or traits of something you are (self)diagnosed with is not a character flaw. If somebody had cancer and took time off work to get treatment, nobody would tell them that they were being selfish, so go easy on yourself.
Personal: Receiving Accommodations as an Adult with ASD
When children are diagnosed with autism, there are supports available through their school system including special education and social work services. However, the transition to adulthood and independence can be especially difficult for people who struggle with changes and meeting society’s expectations. To make it a bit easier, here are some tips for getting accommodations as an adult, even if you are undiagnosed.
If you received accommodations (IEP or 504) while in school, you are given access to the services for disabled students at your school. Legally, schools that receive money from the government have to follow government laws and regulations, including the Americans with Disabilities Act. To access these services, you can ask your academic advisor to connect you or reach out to their office directly. They usually require documentation of your condition(s) and/or evidence of your previous accommodations.
If you are in higher education and did not have accommodations during your public education, you have a few options. You can: 1) reach out to the students with disabilities office anyway and see if they will take you without a diagnosis 2) seek a diagnosis from the school’s student health system or other outside specialist or 3) ask your instructors to honor your requested accommodations without the documentation.
The path for adults who are employed is similar to that of students. If you had accommodations as a child, you have a legal right to request those accommodations of your employer. If you did not, you can seek a diagnosis or ask your employer to honor your accommodations anyway. Here are some tips for getting your accommodations approved:
Prepare a list of the accommodations you’re asking for ahead of time. Do you need preferential seating in class? Do you need increased breaks during the work day? Do you need to work in a hybrid in-person/remote position? Do you need access to fidgets?
Practice how you are going to ask for accommodations. If you have previous accommodations or diagnosis, gather that paperwork ahead of time. If you are asking via email, you could ask someone to proofread it for you.
Research disability laws in your state. Some states might have different requirements about what accommodations are acceptable.
If you decide to talk to your employer or boss about creating an accessible environment, but you have not disclosed your (self)diagnosis you can try framing it as a general concern you have for accessibility. For example, if you want to ask for captions during Zoom meetings, you can request them anonymously through the app or say something like “Could we turn on the captions for anyone who may be hard of hearing?” that does not disclose the exact reason for you asking.
If you continue to run into barriers or need support gathering the documentation for a diagnosis, check out our group classes and individual consultation services where someone can work with you more one-on-one to get you the assistance you need.
Therapy: A Personal Review of SFBT
SFBT stands for solution focused brief therapy, which is a methodology of talk therapy used in individual counseling sessions. It focuses almost exclusively on solving the problem the client presents as opposed to evaluating the source of the problem. The goal of SFBT is to increase the client’s problem solving capabilities.
I was an SFBT client for six years, which is significantly longer than the typical client, during my early adolescent and teenage years. During that time, I worked with the same therapist with a standing weekly appointment. Because of the unusual nature of my experience, my opinions about SFBT have changed since I’ve been in school.
During my experience in therapy, I quickly grew frustrated with the duration that I was in therapy. I was told it would be less than ten sessions, while I ended up having hundreds. I was also frustrated by my therapist’s seeming unwillingness to accept that some of my problems came from sources outside of my control. Up until learning more about SFBT I would have said that it is not suitable for people with similar experiences to mine.
However, after learning more about SFBT in an academic sense, I have changed my opinion on it. The data supporting it is extensive, and it has been approved for evidence-based treatment for many more mental health concerns than other popular mentions such as CBT. Many people find it helpful because it gets right to the point of why people seek out talk therapy, which is to be given a solution to their problems. SFBT teaches the client how to make their own goals and formulate possible solutions.
Based on the data I’ve seen, I believe that SFBT could be beneficial for people with autism, especially if they want specific advice about issues like social relationships and executive functioning. Because it averages at about five sessions, it is also helpful for people who want a short therapy experience due to time, money, or other limited resources. It is not as commonly practiced as CBT, so it might be difficult to find a therapist who explicitly specializes in this technique, but if you bring it up to another therapist they should be willing to pull therapeutic strategies from the literature about it.
Interview With A Neurodiversity Affirming Therapist
This past week, I had the opportunity to meet with a local therapist in the Ann Arbor area. Michelle Ferguson runs a private practice called Open Minds which is a neurodiversity affirming therapeutic practice for neurodivergent children and their families. I met with her for an interview focused on guidance for future practitioners.
First thing I noticed about Open Minds was the sensory environment. The entire office is scent free and has multiple therapy rooms for clients to pick their desired sensory level. In the play therapy room, there is a wide range of activities accessible for clients to guide their session. Throughout the public areas and waiting room there are several signs explaining the procedures in the office, including current COVID guidelines. As an autistic adult I was comfortable in the space throughout the time I was there. I was also reassured by the anti-ableist signs posted throughout the office, explicitly stating that the practice is accepting of neurodiversity.
The main therapy Michelle works with her child clients is synergetic play therapy. This type of play therapy is child directed and includes a focus on regulating the nervous system. Synergetic Play Therapy is the link to more information about this therapy as a modality. I was intrigued by this method because I do not have as much experience with play therapy modalities, so I will be doing a post dedicated to what I find coming in the next few weeks.
For future therapists, Michelle recommends being humble about what they don’t know about neurodiversity. They should educate themselves and make disability an explicit and intentional part of their inclusion. When doing initial evaluations, explicitly asking how you can change anything about the environment to make it more sensory comfortable. If the client tells you anything they want changed, make a note for the next session. Being aware of visible and invisible disabilities and accessibility is critical for therapists to be more inclusive.
Future research is still needed for the development of more evidence-based non-talk therapies like music, EMDR, and play therapies. The overwhelming majority of evidence based therapies are based on verbal communication, which many autistic people struggle with. By making therapists more aware of communication differences, they can be more accommodating of autistic people in their offices.
Michelle provides services to children from birth through age 12, parents, caregivers, and families. She is committed to helping kids and families experience greater enjoyment in their relationships, and increased competence and resilience at home, school, and play. She honors diversity in all its forms and strives to make every person with whom she works feel welcomed, affirmed, and respected.
Michelle specializes in working with children with brain-based differences, such as Autism Spectrum Disorder (ASD) and ADHD, and in providing clinical services to parents and caregivers of children with disabilities.
Childhood: Bonding With Autistic Children
Whether your child is autistic or you work with autistic children, you likely have found that you struggle to interact with them as a neurotypical adult. This post will address some simple ways to connect with the autistic children in your life.
The most important thing is to meet the child where they’re at, without putting neurotypical standards and biases on them. Understand that they will always communicate differently than you, so treat it like you are learning a new language. If you try to force your child to appear neurotypical, you risk damaging them and your relationship.
Now that you are ready to interact with the child, try engaging in some co-regulation strategies. You have probably observed your child regulating themselves by rocking, spinning, or other motor behaviors, so try joining in! These behaviors are pleasant for your child, so encouraging them to do so by joining in will teach them to associate that pleasantness with you. A great example of this is holding your child in a cross-legged hug on the floor and rocking with them. You can think of it like you are soothing them if that helps.
Similar to sharing regulation behaviors, you should make an effort to learn about your child’s interests. If they are crazy about trains, maybe learn some train facts that you can talk about the next time they bring it up. If your child likes to line up their toys, verbally encourage them by complimenting their hard work and ask them if they’d like you to join or if they need more materials. Your child will notice these gestures and feel more comfortable sharing themselves with you, especially if your child is older.
In many ways, parenting an autistic child is no different than parenting a neurotypical child. There are just a few things that you need to be more acutely aware of, such as the environment and your child’s meltdown triggers. You are your child’s biggest advocate as they learn how to navigate the world, so you should make sure your child feels understood and seen by you. Joining them in what they are already doing will allow you to learn why they are doing things and will allow you to connect with them on a deeper level than if you try to enforce your own self onto them. Ultimately, whether your child is autistic or not, they are a person, so you should connect with them like any other person.
Personal: Autism and Roommates
With the current skyrocketing housing prices in the United States, and the fact that many autistic people remain un- or under-employed, it is likely that many autistics will find themselves living with roommates to afford rent. I currently live in a rental house with two roommates and have lived with others in apartments in the past, so I wanted to share some of the lessons and tips I’ve learned through the years.
The most important piece of advice I can give is to try everything to get yourself something like personal space. Ideally this would be a bedroom, but I know that American dorm rooms usually have you living with at least one other person. In this situation, I would recommend turning your side of the room into an autism friendly space as much as possible. Try talking to your roommates about putting in lamps and other lights instead of using the overhead light, and deciding on rules regarding food/guests/bedtime/etc. Establishing these rules before moving in will create the best environment for you.
If you are living with people in an apartment or house, personalize your bedroom to be as cozy as possible for you. Use tapestries and blankets to rescue noise coming from the common areas. Put up string lights or lamps to avoid using the overhead light (obviously this one was big for me) and make the space your own by including your fixation or special interest in the decor. I would also suggest communicating your diagnosis to your roommates early or before you move in, and explain that you may not spend a bunch of time in common areas. This will help ensure that your roommates are understanding and don’t feel like you’re ignoring them.
The most important thing to consider when living with roommates is how to have effective communication with them. You’ll need to be able to tell them in some way what you are needing, whether that’s verbally, through text, or some kind of whiteboard system. No matter what, your roommates are going to be doing life with you, so they need to be able to respect your diagnoses and your space.
Therapy: Making Talk Therapy Inclusive
Talk therapy is where a lot of autistics receive the majority of their support due to a lack of specific resources for autistic adults. Because of this, if you are a therapist, there is a high chance you will encounter autistic adults and children in your practice. As a social work student myself, we often discuss how to improve inclusivity in our social work practice, so these are going to be some of my tips for fellow counselors.
A quick area of improvement for private practice counselors can be made in the environment of their service space. Dimming lights, posters expressing autistic acceptance (no puzzle pieces), fidget tools easily available, and having accessible seating are all ways that counselors can improve their space in a single day.
Once a client is in your office for therapy, don’t force them to make eye contact or communicate with gestures in the same way that neurotypicals will. You should be prepared for inevitable communication deficits between you and your autistic clients, and for the discomfort that this will likely cause you. Counselors and therapists are expected to be aware of and put aside their biases for the duration of the appointment, and this also applies to neurodivergence.
Therapists might need to reframe their questions to make them accessible, but they should wait to do so until meeting the client and getting an idea of their communication level. If a client seems to be severely struggling with verbal communication, it might be helpful if you provided them with an AAC device or picture board. Always ask the client or their family what they think would be the most helpful for the session.
When first meeting with an autistic client, or any client, the best way to make them feel as comfortable as possible is to explain the procedures and routines ahead of time. By defining the procedures of your office, autistic and neurotypical people will know what is expected of them. This will help alleviate any confusion or discomfort about where to park, where to sit while waiting, and the processes once the therapist is ready for them. Some things to consider explaining include the forms of your office, the introductory questions you will ask, and procedures for scheduling or rescheduling appointments.
By asking clients what would make them comfortable and being clear about the procedures of your office are easy ways to build a therapeutic alliance with your autistic clients. This relationship is even more important for people who struggle with socialization and interpersonal skills. As always, ensure that the treatment goals you create reflect the client’s goals and not neurotypical standards for behavior, and your autistic clients will be able to thrive in your practice.
Therapy: A Personal Review of DBT
Dialectical Behavioral Therapy (DBT) is a type of talk therapy that focuses on identifying what can and cannot be changed by the individual. Acceptance of what is out of one’s control and working on what can be changed is the dialectic that this modality utilizes. It was originally developed for Borderline Personality Disorder, but new research suggests that it is also effective for other conditions such as autism.
My personal experience was in a revolving DBT group that included individual therapy. The group time would cover skills from the DBT manual which includes mindfulness, interpersonal effectiveness, distress tolerance, and emotion regulation. These skills are taught explicitly, which I found very helpful as an autistic person.
The way my group was structured was that we discussed the therapeutic skills and how we were trying to use them outside of the group. We traded ideas around regulation and shared when we were struggling with the skills. This was supplemented by weekly individual therapy sessions where we discussed how I would use the various skills to meet my personal goals.
DBT was the most effective therapy modality that I was involved in because of its focus on both change and acceptance. The skills were explained in a way that made them easy to understand and practice, and the nature of DBT is that it is nonjudgmental. My biggest criticism is that to be in this group I had to have a BPD diagnosis. My therapist was very clear with me at the start that this diagnosis was only so that I could be in this group since it was sponsored by my university, because they thought it would be effective for me. However, BPD is an extremely stigmatized diagnosis, so some might choose to avoid it and avoid treatment.
As research into DBT continues to evolve, autism is one of the conditions that shows the most promise with DBT intervention. I would highly recommend it to other autistics due to its focus on skill building and sensory regulation. If you are autistic and interested in DBT, it is likely that your therapist will test you for BPD since this is what DBT was initially designed to treat.
DSM 5 Criteria Explained
The DSM 5 is the current diagnostic manual used by social workers, therapists, and psychologists to diagnose neurodevelopmental and mental health conditions. Because it is intended for professionals, the language in it is often difficult to understand. In this post, or series of posts, I will go through each of the diagnostic criteria for Autism Spectrum Disorder.
Category A in the criteria addresses persistent deficits in social communication and interactions with others. To qualify, these deficits must be present across multiple contexts like school and home. Each of the following must be present in some capacity:
1. Deficits in social exchanges
Examples: starting conversations inappropriately or not at all, failure to maintain conversation, reduced sharing of interests or emotions, and failure to respond to social interactions in the expected way
2. Deficits in nonverbal communication
Examples: reduced or nonexistent eye contact, not understanding/using social gestures, lack of expected facial expressions, and struggles combining verbal and nonverbal communication
3. Deficits in developing and maintaining relationships
Examples: struggles to adapt behavior to different social contexts, difficulty making friends, not being interested in making friends, and difficulty cognitively understanding relationships
Category B in the criteria addresses repetitive movements, behaviors, and interests. To qualify, two of the following must be met currently or historically.
1. Repetitive motor movements, use of objects, or speech
Examples: simple motor behaviors, repeatedly lining up toys, echoing speech or sounds, and scripting responses to situations or socializations
2. Insistence on sameness or routines
Examples: extreme distress at small changes, difficulties with transitions, rigid thinking patterns, and doing things the same way
3. Restricted interests
Examples: strong attachment to unusual objects, only talking about one topic or interest, and choosing to play with a single category of toys
4. Under or overreaction to sensory input
Examples: apparent indifference to pain or temperature, adverse responses to specific sounds/lights/textures, fascination with certain stimuli, and using sensory stimuli to self-regulate
Category C addresses the fact that signs of autism must be present early in development, even if they don’t fully manifest until later. It also addresses how people can be taught to mask their symptoms, especially as they get older. Unmasking might be required for someone to get an accurate diagnosis.
Category D simply states that the symptoms the person is experiencing must make it difficult to function in relationships, work, school, and/or other areas of functioning.
Category E states that, to be diagnosed with autism, the symptoms are not better explained by another condition. This category is to remind the person doing the diagnosis to check for other conditions that can influence scores on autism screenings, such as an intellectual disability.
Personal: Growing Up Undiagnosed
My story of growing up undiagnosed for autism is one that many AFAB people face, especially in the United States where we have privatized healthcare. I made my way through the mental health care system, including being hospitalized more than once, but I was not diagnosed with autism until 2019 when I was 20 years old.
At one point my active diagnoses were: social anxiety, generalized anxiety, auditory processing disorder, depression, and ADD. If you have experience with AFAB autistics, it does not come as a surprise that autism was overlooked. It took my pressuring a psychologist for them to consider that, rather than having each of these different conditions, I might have one condition that encompasses all of my symptoms.
Healthcare in the United States does not have an effective form of interdisciplinary communication, so it is often up to patients and their families to request a review of their diagnoses. Treatment is often expensive, and being diagnosed as an adult is even more difficult than diagnosis as a child. This is why I support self-diagnosis in the neurodivergent community.
I plan on writing about my experience getting a diagnosis, but growing up undiagnosed contributed to my severe mental health issues to this day. I grew up feeling like an alien amongst my peers, because I knew I was fundamentally different from them but never knew the reason. If I had known I was autistic earlier, I could have accepted my diagnosis and it would have saved me countless sleepless nights researching to find a label that fit my specific version of “quirky”.
I don’t write this to place blame on any one person. I, and countless other AFAB autistics, were failed by the education and healthcare systems and fell through the cracks. This is part of what inspired me to create this organization, to try to make diagnoses easier to access.
ABA: Harm Reduction
If you’re a parent reading about ABA, you’re undeniably getting mixed messages about its efficacy and ethics. Autistic people and their allies are saying that all ABA is horrible and abusive, and to some degree it is. ABA is abusive in the same sense that capitalism is abusive. Whenever people are expected to perform specific tasks in a predetermined way to qualify as having value, there are going to be people who don’t fit that norm. In my opinion, harm reduction is a more realistic goal than the complete abolishment of ABA, just like I believe that introducing policies like Universal Healthcare in the US is a more realistic goal than jumping right into complete socialism. By making room for compromise, without giving up the ultimate goal, we will see more people join in supporting change. I’m currently working on part 2 to my larger post about this topic, but I just wanted to state the ethical reasons for this parent guide.
For neurotypical parents with an autistic child, the diagnosis is likely scary to receive. You’ve just been told that there will always be a fundamental communication barrier between you and your child, and that you are likely going to have to completely adjust your life for your child. Good parents are left with seemingly only two choices: provide their child with no support or provide them with support that is often done incorrectly and can be abusive. If the child is not in public school, their available support is even more limited. All of these limitations to alternative services do not even include financial and time constraints.
Here are some important tips for parents. As always, leave a comment if you have more advice to give!
Establish open communication with your providers. This includes the RBT(s), center staff, and BC(a)BAs.
Have services in the home if possible. If you will be going to a center, ask to see the workrooms and common areas.
Attend any and all team care meetings! If your child is old enough, include them in this process as well.
Review the BIP forms if your child has one. This is how the staff will respond to your child’s unwanted behaviors.
Pay attention to how many hours the BCBA or evaluator suggests for your child. ABA research shows no benefit to increasing hours over 10-20 per week.
Review what reinforcements will be made available to your child during work time. Are you comfortable with food being used? Are your child’s comfort items being taken away to use as reinforcement?
Thoroughly review any and all programs being run with your child. What are the demands being placed on your child? Are the reinforcements natural and relevant? Is there a balance of “table time” and NET?
Learn more about the study of behaviorism and behavior modification
As you can tell from this list, being aware of your child’s services is your critical role as your child’s primary caregiver(s). You have the final say in any programming and procedures for your child. You or your insurance provider are paying for ABA as a service for your child, so you have the right and obligation to make sure that it is effective for your child’s needs. If you have doubts about this, just ask your child how they feel about going to sessions, and try to find out the reason if they don’t want to go.
Childhood: Autism and Trauma
Trigger warning: this post mentions traumatic experiences, ableism, sexual assault, and suicide
Research into the long term impacts of being autistic on physical and mental health are scarce. Any research that does exist usually focuses on children instead of adults as information is often easier to gather from parents before a child grows up and leaves the household. Because of this, I will be speaking on my own experience of autism and trauma as well as the perspectives of people I have spoken with about this issue.
Generally speaking, growing up with any marginalized identity is in some way traumatic for a child. This includes being a minority racial group or of a lower socioeconomic status or being an immigrant, but it also includes neurocognitive impairments like autism. Growing up autistic in a world that is built for neurotypicals and is generally unforgiving of differences is traumatic for the young autistic. Because of a lack of mental health care in the United States, this trauma can go unnoticed for several years.
Especially for AFAB autistics, whose autism often goes undiagnosed and unaccommodated for, rates of anxiety, depression, and suicide are higher than AFAB neurotypicals. These mental health problems are often related to ableism in school and in the workplace like being bullied by peers for stimming in public.
Certain types of traumatic events, including sexual assault, are more common for people on the autism spectrum than neurotypicals and even some other types of neurodivergence like ADHD. Psychologists tend to believe that this is due to autistic people lacking understanding of neurotypical social cues and how to respond to uncomfortable situations. Until recently, there was a pervasive stereotype that autistic people were more likely to perpetrate sexual assault due to their lack of understanding social boundaries, but modern research shows that the opposite is actually true.
Trauma is usually treated by using talk therapy, usually CBT, where an individual meets with a therapist regularly to discuss their traumatic event and their thoughts/feelings about that event. This type of format is often inaccessible to autistic people due to a lack of therapists specifically qualified to have these sessions in an autistic friendly fashion. Most autistics I have discussed mental health with have said that they prefer using medication for their mental health because they only have to see the psychiatrist for 15 minutes every few months rather than seeing a therapist once per week. However, research shows that the best therapeutic results come from the client having psychiatry and therapy.
If you are experiencing a mental health crisis, use this phone number to speak to someone!
800-273-8255
Childhood: AFAB vs AMAB Presentation
In the interest of being as inclusive as possible while discussing the diagnostic disparities among biological sex, we will be using the terms Assigned Male At Birth (AMAB) and Assigned Female At Birth (AFAB). This link has more information about what those terms mean if you want to learn more!
The majority of people professionally diagnosed and treated for autism are AMAB. This translates to stereotypes about how autism presents itself that can be harmful for people who are AFAB. These stereotypes in media often include specific fixations (trains, science, etc.) and social awkwardness that is usually the comedic relief. By reducing autism to these traits, we ignore a large portion of the population and their needs.
Sex differences in diagnosis rates are slowly decreasing as diagnostic physicians are learning about the different presentations of autism, and this is also associated with the “modern increase in autism” that some people use as a claim to invalidate the autistic experience. More is being learned about autism, specifically the wide range of presenting symptoms, so as more information is gathered we will continue to see more people who fit those criteria to be diagnosed.
In American society, young AFAB children are socialized to be docile, demure, and quiet. Therefore, a child who naturally fits those traits, even to the extreme, is praised and their caregivers are not alerted to any potential issue until the child is older and can verbally express their experiences. On the other hand, a young AMAB child who is much more reserved than his peers will ring the alarm bells for his caregivers to get him evaluated for autism.
This disparity in diagnosis rates is exacerbated by the biases of physicians and pediatricians who might not be educated on the presentations of autism. Autism used to be medically considered to be a “little white boy” condition that did not impact other members of the population, but research overwhelmingly suggests that rates of autism are just as strong in other groups. AFAB children are significantly less likely to receive any kind of early intervention for their autism and often are not diagnosed until their teens or adulthood, when acquiring a diagnosis is significantly harder. This leads to worse outcomes for AFAB autistics overall because they have less access to the already scarce resources for the autistic community.
If you are wondering how this disparity applies to your family or practice, I ask you to evaluate the presence of AFAB autistics in your life. If you have one autistic child, it is significantly more likely that your other children will be autistic, so kids should be evaluated by professionals who are educated in the nuances of the condition. If you work in a practice that only seems to have AMAB autistic people receiving services, perhaps you need to evaluate the professionals you are getting referrals from to make sure that they are adequately evaluating their AFAB clients. As always, remember that the neurotypical, or non-autistic, population has a duty to ensure that their autistic counterparts are represented and respected, and that includes AFAB autistics.
ABA: Abolishment vs Adaptation Part 1
I have a unique perspective as someone who has all levels of connection to autism, which is one of the many reasons I am so passionate about it. I have family members who are diagnosed, I worked in ABA services for almost 2 years, and I have my own diagnosis of autism. Because of all these identities, I have conflicting opinions on the ABA debate that is currently ongoing on the internet. I’m going to explain both of my alternate opinions and then I will talk about how I have integrated them.
First, my identity as an autistic person will always be more important than my experience having worked in ABA. Also, I would like to acknowledge that I have worked at one ABA center in mid-Michigan and served 3 clients from ages 9 to 16 during that time. I cannot speak on early interventions or ABA with other populations, so I wanted to be extremely transparent about that. As an autistic person, I understand all the way that ABA has been found to be harmful. I wholeheartedly believe that the field as it stands cannot be allowed to continue as the damage to autistic individuals far outweighs any measured improvements in neurotypical definitions of functioning. ABA as a field has an extremely negative history, and it has not been updated to be applicable to all cultures and identities. I believe in the science of behaviorism in the sense that I believe that all behaviors (internal or external) have a function, and that understanding that function will help you understand the person. My agreement with the field of ABA and behaviorism ends there.
As a behavior technician, the person working directly with a child in ABA, I was in charge of collecting data and running programs that were created by my supervisor who supervised our sessions once per week and did evaluations to change behavior plans every 3-6 months depending on client progress. ABA emphasizes the use of Discrete Trial Training, which has the client repeatedly answer questions or complete small tasks in exchange for an immediate reward while the technician collects data on their responses. The strict programming of ABA is one of its fatal flaws because it does not allow for generalizability of any skills that a client gains from this technique. It also creates prompt dependence, where the client waits for the technician to help them with the answer, which cannot be considered learning.
My overall opinion leans more towards reform of the current ABA system for a few reasons. The first, and largest, is that ABA is currently the only therapeutic option for thousands of individuals and families. Because of the monopoly that ABA has on the industry, they are often the only providers in an area and the only ones covered by insurance and Medicaid. Because of this, simply removing ABA as a field would leave these people stranded and uneducated on their other options. Without creating a large enough pool of other therapists, we cannot ethically remove a service that so many people are utilizing. Also, there are a few skills that I believe ABA is great at teaching, when done ethically and correctly. Any skill that involves completing smaller tasks in steps is easy to teach with ABA because it rewards any small amount of progress and emphasizes teaching each step individually.
Obviously, with this being one of the longest posts to date, this is a huge topic. It is a discussion that impacts millions of providers and clients, so being able to have dialogue that acknowledges all sides of the issue is crucial if we are going to make progress. If you are currently an ABA professional who has found themselves here, check out some of my other posts to make sure that you are providing the best care possible to your clients. I will also be continuing this discussion in later posts, as this is not the limit of my opinions!
Therapy: A Personal Review of CBT
As I start my series about my personal experiences with different therapies, I wanted to reiterate that they are entirely based on my opinions of these interventions. All of them are able to adapt to people with autism, but everyone will have different experiences with everything. The success of any type of talk therapy depends entirely on the relationship between the client and the therapist. If you are looking into any of these therapies for yourself or a loved one, the therapist you choose will be critical to your experience.
CBT stands for cognitive behavioral therapy and it is the most widely used type of talk therapy in the United States. It follows a fairly rigid formula that is easy to teach to therapists, so the overwhelming majority of therapists have at least some experience in it. This formula considers behavior, thoughts, and feelings to be interconnected so that changing any of the three will impact the others. CBT therapists primarily focus on changing behavior because it is easiest to monitor behavior changes externally. This can be beneficial or harmful depending on the client’s relationship with their own behaviors.
Personally, I was in a CBT program at a university’s assault program. This therapy was specifically designed to treat PTSD by changing thought patterns about the traumatic incident and the person’s sense of self. I completed six weeks of the program before being discharged for having PTSD scores below diagnosis level. I would consider this program to be a success for me because my symptoms were significantly reduced in a short period of time, but there are some areas where CBT may not be as effective for others.
CBT is meant to be a short term solution focused intervention, so you usually only meet with the therapist for a few months. Some people prefer this while others prefer to have someone they meet with regularly for several months or years. CBT also requires a large amount of homework that is assigned by the therapist each week. This homework involves tracking and challenging distorted thinking patterns and behaviors. Some people say this feels invalidating of their emotions and blames the individual too much for their situation, but my specific therapist took great care to ensure this didn’t happen for me. This is definitely something to watch for as changing behaviors is often much more difficult for people with autism due to routine and thought rigidity.
Symptoms or disorders related to anxiety like PTSD can be helped with CBT because it addresses the cyclical thought patterns that can get people caught in a harmful cycle. If uncontrollable thoughts are the root of the issue for the person seeking therapy, then CBT might be a good option because of its availability and research proven effectiveness for anxiety.
Therapy: Symptom Treatment vs Autism Therapy
If you find yourself investigating therapy options for yourself or someone you love, you will probably be overwhelmed by the academic language often used by organizations and offices around you. There are many different types of therapies that have been found to be beneficial by psychologists, but how do you know which one is right for your situation? One of the things to look for is if the treatment program specifically mentions its adaptability for autism or if the practitioner specifically mentions having experience working with autistic people.
Just because an organization does or doesn’t list autism experience, there are still things you need to investigate before committing to an intervention. One question you can ask the therapist is whether they say they focus on autism therapy or symptom treatment. This may not seem like a large difference, but this will reveal a lot about their attitudes towards autistic people. If the therapist says they focus on autism therapy, this should be a red flag because it implies that they see the autism as the root of the person’s struggles. Treating autism is also impossible because it is a condition of the brain.
Therapists who are supportive and inclusive of the autistic community will focus on treating the specific symptoms that are causing the person distress. For example, if a person seeks talk therapy for social anxiety related to autism, the therapist should not focus on making the person act more neurotypical in social situations. Instead, the therapist should work with the client to create a plan to address the behaviors and thought patterns that make the client nervous about social situations and help them come with a plan for navigating potentially tricky socializations.
This attitude will be much more effective in the long run because the client is more involved in the therapeutic planning process and in making their goals fit their lifestyle. Therapists who want to support their autistic clients will address their own inherent ableism and will create therapeutic opportunities for their clients to actually improve their quality of life instead of perpetuating trivial neurotypical standards that are proven to be harmful to their clients.
Therapy: Behavioral vs Emotional Interventions
There are very few types of therapies for autism that are covered by insurance programs, but if you are lucky enough to have some extra resources there are many options that you can pay for privately or access through public education. I tend to think of these as being divided into two categories: treating behavior and treating emotions. Depending on your or your child’s goals, you will need to decide what programs are best for you.
Behavioral interventions include ABA, speech pathology, and physical therapy. Notably, these focus on actions that you or your child can take to reach their goals and improve their outcomes by changing some part of their/your behavior. ABA is the most common therapy received by autistic people, but it is not the only one by far. Speech and academic interventions can be found in most public school systems, and can be offered during school hours. ABA and physical therapy often are done outside of school hours, which can be an additional strain on the family system if the child is not able to commute to these services on their own.
Emotional interventions include psychotherapy, cognitive behavioral therapy, and play therapy. All of these are done by a psychologist, therapist, or social worker and fall under the realm of mental health treatment that can be accessed by the majority of the population. Unlike behavioral interventions, these often do not require a diagnosis or referral to make an intake appointment. These types of interventions work to improve the client’s coping skills and reduce their mental health problems.
Ideally, all autistic people would have access to whatever services they want from either category. However, this is often not the case as individuals and families are limited by income and service availability. Personally, I would recommend people starting out with one program in each category and try to find the one that fits them the best. By addressing all aspects of the client, they can have a more holistic approach to their health that is known to benefit all members of the population, not just those who are autistic.
For more information about each of the interventions mentioned, check out the links below!
ABA: https://www.appliedbehavioranalysisedu.org/what-is-aba/
Speech Pathology: https://www.asha.org/public/who-are-speech-language-pathologists/
Physical Therapy: https://www.medicinenet.com/physical_therapy/definition.htm
Psychotherapy: https://www.psychiatry.org/patients-families/psychotherapy
Cognitive Behavioral Therapy (CBT): https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610
Play Therapy: https://cpt.unt.edu/what-is-play-therapy