Tag: AUTISM

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Is CBT good for Autistic people?

This is a question that until recently would have been a “yes!” from experts. Newer research has suggested that that may not be the case.

“We fundamentally need to ask ourselves: If it’s working, then whom is it working for?” says study lead Shivani Sharma, head of the psychology division at the University of Hertfordshire in the United Kingdom. “Because it’s really odd that there’s such a difference between the clinician ratings, the parent ratings, and then the person themselves, their own rating.”

I have read in books, forums, and articles about CBT not being as effective for autistics but haven’t come across an easy to digest explanation. Now there is one! This is a great video about CBT and WHY it’s not always good for us, from someone I consider a great Actually Autistic advocate. Seriously go check out is youTube channel: Autism From The Inside

AbleTo

Not long ago I was contacted about AbleTo, an online mental health & coaching services my insurance is contracted with. I humored the woman on the line and let her go through her spiel while I did a little research. On their website I saw that it mainly utilizes CBT.

After explaining that I am recently diagnosed autistic and that CBT is not always helpful for us, I asked her if CBT was the only method employed. This was a question she was not prepared for. She put me on hold to talk to her supervisors and came back with the non-answer that the therapists were trained in multiple methods. Though she could not answer the question on if other modalities were actually employed. I thanked her for her time and said that I would do my own research and call back if I felt like AbleTo would be good for me.

For those interested, AbleTo does not seem to be any more effective than other online therapy services, like Better Help, but it is covered by some insurances. Nothing I saw in my very quick research suggested that it was good for autistics. I won’t be calling them back as I am more than satisfied with my current therapist. There do seem to be plenty of people out there who feel satisfied by virtual therapy and I am not against using these services. Especially if obtaining quality professional help in-person is challenging.

*Disclaimer* I have never used an online/virtual therapy service. I would be curious to hear from #actuallyautistic people that have used these services. If you have used them please share your experiences!

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Autism Acceptance

April is Autism Awareness Acceptance month! Though we are all pretty aware of autism now. Most #actuallyautistic people are now pushing for autism acceptance over awareness. It’s the end of the month so I will leave that discussion for the more informed autistic voices who have already voiced this perspective. Please check out this article from Forbes. It does a great job of explaining the perspective of acceptance over awareness and offers information and links to help understand what autistic people experience.

“Whilst it is sadly true that parents struggle and Autists often do experience social rejection from their neurotypical peers, the perspective in which these things are the fault of Autism itself is loaded with ableism and fails to reflect on the society that is exacerbating these problems rather than supporting inclusion, understanding and acceptance.”

It was completely by accident that we scheduled autism evaluations for our kids this month.

When our son was diagnosed with ADHD last November It triggered in me the drive to actually understand what it was. Even though I’ve always been aware of it I was woefully uninformed about it. Learning about ADHD led me to Neurodivergence, which led me to Autism. I have done a lot of research on all of this already, and I feel like I have barely scratched the surface. The more I’ve learned about neurodivergence the more I recognize these traits in me and my family. When I say family I mean everyone, not just my husband and children, but also in my parents, my extended family, and also in the family I married into. It is definitely weird to finally recognize something that has always been there.

I have family members that are diagnosed with ADHD and Autism. Learning about the genetic component of both prompted me to finally seek answers to why my children feel more deeply, and react more strongly than other kids. I shared earlier that all four of us, myself, my husband, and both my children have all been diagnosed with ADHD. But I felt that there was something more. No doctor or family member has ever suggested that my kids were different. When I voiced my concerns about my son I heard from family “He’s fine, don’t worry about it. He’s just fine.” And yes, my son is just fine, and so is my daughter. But what if they aren’t fine later on? What if they need more help than we’re aware of?

This month we learned that both of our children are autistic. I was right.

I’ve also been noticing the similarities between the challenges my children are facing and what myself and my siblings faced in our youth. One of my siblings has been diagnosed as autistic, and I wouldn’t be surprised if the other does as well. If I have a sibling and cousins with diagnosed autism, if there is a genetic component to autism, what does that mean for me?

I have gone through every available screening test and questionnaire that I can find. These are tools developed by clinicians to help determine if an adult or child meets the criteria for autism. Every. Single. One. came back as meeting the criteria for a diagnosis of autism. Every one. I even took a couple twice to be sure. I had never considered autism for myself, but I have always felt different. I’ve just chalked it up to my challenging childhood, or my atypical life.

So what is one supposed to do with this information? I do have an upcoming autism evaluation. It is a total of four appointments totaling 10 hours, and it will cost me $2,700 out of pocket, as it is not covered by insurance. In contrast, my kid’s evaluations were about three hours and we only had to pay the copay.

Because of the high cost of adult autistic evaluations a self diagnosis is widely accepted in the autistic community. Some people simply cannot afford to get an evaluation. The research on autism is also rapidly improving so many providers have an outdated understanding of autism. There is also significant stigma and rampant misinformation in the lay population. Why would people be willing to pay so much money for an evaluation, or self diagnose themselves as autistic? Because we finally have a reason for why we feel different. We can begin to recognize and celebrate what makes us unique. We can shed these masks we’ve been using, sometimes not very effectively, to try and fit into society. We can forgive ourselves of the shame or guilt we feel for not living as the world expects. We can finally feel that sense of belonging that has been missing.

While I do not yet have a diagnosis, I now identify as an autistic person. I will still pay thousands to get a diagnosis because it may help me later in life. A diagnosis may even hurt me down the road too. I will likely receive push-back from people until then. But I feel like I am finally understanding myself. And isn’t that the most important thing in life? Feeling comfortable and confident in our own skin? Understanding who I am, and how my autistic brain works will help me be a better mother to my autistic children as well.

I am autistic. My children are autistic. And I wouldn’t change that at all.

I wasn’t sure if I should publicly share this information. Heck I’m still processing what this all means and what I’m supposed to do next. But I’ve been made aware of the shift happening in the autistic community. Autism is nothing to be ashamed of. It is not a disease to be cured. Autistic people are not less than. We are just living in a world not built for us. Autistic people deserve the same respect and equity that everyone else has had the luxury of living with. If I can participate in and help move this shift towards acceptance, why in the world would I keep quiet?

“Autism cannot be separated from the Autist, it is a major part of a person’s identity and treating it like a problem to be solved is demeaning. Awareness is not enough and acceptance is the conversation we need to be having.”

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I am Burnt Out

It’s been a minute! This was originally going to be about the basic housekeeping that I’ve done on the website, but it quickly shifted into describing my current state of burnout.

Life has been sooo busy for me the last few months. Multiple items on the calendar each day for me, my kids, and my husband. Doctor or dentist appointments, psychologist or psychiatrist appointments, physical therapy, training sessions, school tours, hair appointments, cub scout and girl scout meetings, baseball practices, etc. My kids got invited to 7 different birthday parties this month! Having so much on my calendar means that I am losing track of things I’ve committed to. I’ve had to rearrange appointments or just flat out cancel things, sometimes at the last minute.

I’ve recently started fostering a cat. I impulsively applied to a rescue and was approved. Generally cats are pretty easy for me so I did not expect this to be challenging. And it has been easy, with one notable exception. Earlier this week I woke up at 5 am and I drove an hour to the vet clinic for the cat’s alter appointment. I waited almost an hour to speak to someone before I realized I was at the wrong location. When I finally got home I next realized I was a day early. I am NOT a morning person. So not only did I stress out myself and the poor cat, I also lost sleep because of my mix-up.

And then I got sick with a mild stomach bug.

The last few weeks I have been lamenting the lack of freedom in what I do with my days. I’ve been longing for the boredom I felt while initially recovering from my hysterectomy. I am way past my limit, and now my body made the choice for me. I am burned out!

Check out these videos on burnout & recovery from burnout. They are from the ADHD & Autistic perspective, but most of this is likely applicable regardless of your neurotype.

Now that I’ve taken a couple days to recover from the stomach bug and the resulting weakness from not enough food & sleep, what now? I have been avoiding putting more things on my calendar, but that doesn’t solve the problem of the items I still have on my calendar. This means that I am now in the process of eliminating or rescheduling some of my commitments. This is hard for me to do. Some of these things I really did want to do at first, but now I have no interest (or energy!) in doing. I feel like I am letting others or myself down.

If I don’t make time for myself I won’t have anything left to give to others.

As the recovery video pointed out, letting go of some things so that I can say yes to the things that I actually want to do will help me immensely in the long run. I need energy and time to be present for my children and husband, and all my animals. I need to be able to devote time to leading my daughter’s Girl Scout troop. I want to have the freedom to tend to my plants. I want to have time to explore hobbies and crafts.

I need to have the energy and time to devote to this website. For me this is a need and not a want. I need to have an outlet while I am on this road of self discovery, understanding, and acceptance for myself and my family. Because I’ve been so busy I have not had a chance to properly research and share my perspective on any of the many topics I have been collecting. But I am making changes so that I can consistently have this outlet that I so crave.

I have set up a poll/form listing all the topics that I am interested in researching and sharing. Please let me know if you would like to know more about any of these, and I welcome your perspective and experience in these spaces.

https://forms.gle/eX8LyNhPLSMhhXJC6

Comments *should* be available now. Please let me know if they are not visible to you here. Anything entered into my Contact Me form prior to the last couple weeks is lost, unfortunately, but it is now properly up and running so feel free to resubmit.

Until next time!

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It’s Neurodiversity Week!

Welcome! I did a thing! I have my own website now! Which I am still trying to figure out, so bear with me a bit. Neurodiversity Week made me do it…

I have typically shared through Instagram and sometimes Facebook. But recently I’ve been sharing these long posts that don’t really fit with those platforms.

I decided to finally start a blog. Like an actual blog, not the dabbling I’ve done in the past. I wanted a place that I could share whatever I wanted, in a way that I wanted, without feeling the pressure to censure myself, or feel constrained by the platform, or worry about offending contacts on my friends list. I want to share my journey through life in a way that feels authentic to me. I wanted to be able to info dump and use any “foul” language that comes to mind.

So why the name “Life Organized by Chaos”?

I have always loved the phrase “organized chaos.” As a teen I used it to describe the way I decorated my room and the collage art I did. As I got older and life became more complex I realized that my life, the lens I saw it through, had so much chaos; for a few reasons, that I will get into here at some point. I have always been trying to organize the chaos of my life, with varying degrees of success.

So what the heck does all this have to do with Neurodiversity Week?

Well, myself, my husband, and both of our kids, have all recently been diagnosed with ADHD, Attention Deficit Hyperactivity Disorder. As a person with ADHD, a partner, and a parent of people with ADHD, our brains are wired and behave very differently than the typical person. We are neurodivergent, and I kinda like it. Knowing why we behave or think in certain ways has been liberating.

BTW ADHD is a horrible name for this condition, which I can explore another time.

Now that we know we have ADHD, we now know that we are part of the neurodivergent crowd! And oh boy! Does it feel good to have a clearer understanding of how my brain works.

Some of you might not know what neurodiversity is, or what it means to live with a condition that falls under the neurodivergent umbrella. For this welcome post I’ll share a couple definitions with links to help you understand some neurodiversity basics, as I now understand them. As the mood strikes me I’ll explore some of the deeper aspects of it all.

Neurodiversity – ND: Is the variation in the human brain regarding mental functions like attention, learning, and mood. The main point of using this label is that these are simply different ways of being versus conditions that needs to be cured. For instance left handedness is now understood to be a difference, and we no longer try to force left handers to use their right hand. It is now just a difference that can be accommodated. Understood.org shares that “Neurodiversity is a viewpoint that brain differences are normal, rather than deficits…. That’s the basic idea of neurodiversity — that differences don’t have to only be looked at as weaknesses.” Conditions that fall under neurodivergent are Autism, ADHD, and learning disabilities like dyslexia, dyspraxia, etc.

Attention Deficit Hyperactivity Disorder – ADHD: is a neurodevelopmental disorder “that impacts the parts of the brain that help us plan, focus on, and execute tasks. ADHD symptoms vary by sub-type — inattentive, hyperactive, or combined — and are often more difficult to diagnose in girls and adults.” As defined by ADDitude.com

Autism Spectrum Disorder – ASD: From Autismsociety.org “Autism… is a complex, lifelong developmental condition that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation. The Autism experience is different for everyone. It is defined by a certain set of behaviors and is often referred to as a “spectrum condition” that affects people differently and to varying degrees.” And like ADHD, it can be very difficult to get a diagnosis if you are female and/or an adult.

This is the barebones of what neurodiversity is. There are other conditions that fall under the umbrella of Neurodiversity broadly, and there many other syndromes or conditions that fall under the categories of ADHD & ASD. There are so many fantastic websites, blogs, YouTube channels, Podcasts, and everything in between that have amazing content that can give you any and all of the information you might want. I’ve just linked just a few that I’ve come across. Take a look!

I hope that you will stick around while I give you a glimpse of a neurodivergent life through my lens.