My Personal Experience With TMS (Part 1)

I reached a point of desperation about two and a half months ago. The wait between that point and the beginning of my TMS treatments was agony. TMS stands for transcranial magnetic stimulation. It’s not ECT (electroconvulsive therapy); it’s a noninvasive procedure of magnetic field pulses sent to the left side of my brain because that’s the side the magnet waves go for depression. TMS is utilized when antidepressants and therapy don’t work or have become stale.

My sleep schedule was super strict because my shift was in the morning. My job was “following up”, which meant checking on other people to see if someone else did something I needed weeks ago, filling out repetitive documents, navigating the auditory nightmare that is IVRs, and correcting other people’s work. My entire existence was a delicate mental balance of long-term and short-term goals, deadlines, due dates, social etiquette, other people’s ridiculous expectations, and the lengths my ambition went to meet them. After all, the reason I went to therapy and got diagnosed in the first place was that I wasn’t succeeding at the same pace as other women with my skin tone.

I walked into my doctor’s office waiting room and filled out the GAD-PHQ worksheet like I do every visit. This time at the bottom of the page, they added something new: a checkbox for anxiety and depression treatment options that weren’t medication. I checked it. I gave the form back to the reception staff and waited. When they called me back, my doctor told me she was happy I checked the box. We discussed the guidelines for one of the treatment options, TMS, for the office: the patient (me) had to have been on two different classes of antidepressants (SSRI, SNRI, MAOR, tricyclic, or atypical) and been through at least nine months of therapy. I had been through multiple classes of antidepressants over the last few years and had been in therapy this time for eleven months. She thought I was an excellent candidate.

Over the next two weeks, I prepped for my new treatment by reading about other peoples’ social experiences with TMS. As someone perceived as a woman of color, I learned to look for the physical signs of someone being dangerous, sad, and happy. I learned to read the general feelings of the person I’m interacting with (most of the time). As an adult who’s been through the proverbial ringer, I wondered how this treatment would affect me or my perceptions in social interactions.

I had been going through this big self-discovery since 2016, and I learned so much about the world and myself. Once I established myself as an autistic professional, I was able to speak for myself and my work, and it went well for a while. My therapy sessions focused on giving me safer coping mechanisms and managing my PTSD. That said, fighting my depression daily and warding off PTSD flashbacks and panic attacks all the time was wearing me down on every level. Maintaining my social survival mask was getting harder and harder.

The time it took to get my treatment off the ground was longer than I expected. Getting records from my therapist, sorting out paperwork, and verifying my insurance benefits took a few weeks. While I waited, I did my best to ward off panic attacks at work and communicate with my management.

I wasn’t completely surprised when I lost my job. Is anyone ever “completely surprised” when they lose their job? There’s always writing on the wall, and I saw it. I also feel like I probably helped write it; I have my regrets about my frank honesty with my management team, but there I was, only minorly startled. It wasn’t losing the job that startled me though, it was the sudden loss of routine. Even though my schedule wasn’t compatible with my natural body clock, it was fine-tuned to maximize my ability to produce work for that job. The stranger part of it still, was the phone call I received a couple of hours after my lay-off video call from the TMS coordinator. They wanted to begin my TMS treatment the next day. The cosmic timing was not lost on me.

Climbing out of the burnout hole has been a different story. What does successful treatment look like for me? I lost my job. At first, I thought that being rid of neurotypical confines would allow me to flourish. At second, I thought the original plan was to find a job first, to be “ready”. I had done it before, ten years ago, but time was escaping me. I felt like I was walking on Swiss cheese, and I kept falling into the holes repeatedly, anxious about my next move. That day, I had a bittersweet realization that something cosmic happened on a timeline I wasn’t “ready” for because my timeline didn’t line up with my destiny.

My TMS treatment is for my depression (side note: TMS is also a treatment for anxiety) and is thirty minutes every day for six weeks. I’m technically in my third week of treatments. The clicking is painful and annoying, but taking Tylenol helps. The coordinator and I’ve watched My Fair Lady, Monty Python and the Holy Grail, Labyrinth, and we’ve started Hairspray. The treatments themselves are fun in nature and only kind of painful. I have noticed a difference so far is in my internal emotional expression.

Communicating when I’m agitated feels easier and milder, with less urgency. I’ve been cleaning and writing down ideas. The cloud of hope that felt far away seems closer now. Sometimes I get headaches and I remember songs from My Fair Lady and Labyrinth. Another strange experience is that the feelings that had I’d numbed down were coming up again, not as flashes like my PTSD, but as considerate reactions with a mysterious motivation to fix it.

After ten visits, I saw my doctor. We discussed my GAD-PHQ scores from when I started TMS therapy up until that point. My scores had lowered dramatically! I was reporting less frequent symptoms of depression! I noticed that I spent less time trying to get out of my depression holes because somehow my brain now knows how to get back to ‘Good’. I can recognize why I’m upset quicker, but my audio processing acts up when I’m upset and makes for near-constant misunderstandings. It is still difficult for me to get my words together and communicate my feeling effectively. That said, I’m excited to see what else is this therapy has in store for me. I haven’t felt this excited regarding treatment in a very long time.

As for work, I am open to projects and work-from-home positions. I look forward to the next phase of my career as an autistic professional.

Autistic Masking and Being Hispanic

There was a moment right when I first realized that I was autistic. Like a bright, shining bulb. And once that bulb was lit, it lit up a maze I didn’t even know I was in. A tangle of emotions and discovering meaning within myself that I continue to navigate today. However, my internal discovery doesn’t change my outward appearance. This ‘eureka’ moment has led to so many answers to situations in my life, but it has also led to questions.

For most of my life, I’ve been a coded but open book. My emotions were a vulnerability that I bottled up, then shelved. I had a front that wasn’t really a front. I was cranky a lot and spoke in a verbally aggressive tone even if I was saying something nice. I spent a lot of time not knowing what was going on because my attention was continually shifting to my environment, and spent forever wondering what I was missing to be considered ‘nice.’

When I typed a social situation in Google, I was met with a plethora of forums, articles, and groups focused on single issues similar to the social situation I typed in. In forums, strangers comment on the person’s situation, and I would glean from those comments and finagle an answer to my situation.  Each situation solution became a patch that was a social opinion of me, pieced together like a patchwork quilt. Sometimes I would ask my friends what particular actions or phrases meant to be better at socializing. It took up all my energy, and I still sucked.

I cared about social situations off-and-on depending on the situation until I understood why it was so important in the first place. There isn’t an economic logic to feelings, but there is an emotional logic. For example, if you hit someone, the emotional-logical next action is that the person will be angry and hit you back. Whether or not that is the case depends on the emotions of the person you hit and outside factors. Depending on the context of who you hit and how you hit them, it might not even be a problem, like in a boxing match. Another example, if you hurt a friend’s feelings accidentally, the emotional-logical next action would be to apologize. Again, whether or not you actually need to apologize depends on how close you are to the friend and the severity of the hurt feelings. Some people feel better with just knowing you’re remorseful.

Emotional logic got more complex, the more I learned about human nature and needs.

Masking is pretending to know what’s going on in a conversation involving facial cues, it’s acting “normal,” it’s hiding sensory pain, so people don’t make fun of you. It’s the struggle with coming up with the “right thing to say” all the time because it seems that everything you say is wrong. It’s someone you’re not so people will accept you.

My ‘patchwork quilt’ of outward responses to society was actually part of the foundation of my mask. It’s a mask I still put on in unfamiliar territories, like camouflage in a recon mission. Continue reading

#BoycottToSiri and Autistic Civil Rights in the Media

“To Siri, With Love” is a memoir written by Judith Newman about her life raising an autistic boy. It’s a New York Times best seller, with rave reviews from people like Jon Stewart. The book has been described as moving, honest, and funny.

My feelings on the book started at zero. I’d heard about the book, but I had no interest in reading it. Like most of my fellow advocates and activists, I became interested when I saw the #BoycottToSiri tweets from Amythest Schraber.

I haven’t read the book, but I’ve seen snips and clips. Those clips and snips have been horrifying to read. It’s enough to make me question how the book got published.

The common theme of those excerpts is that she continuously makes fun of the autistic experience at the expense of her son.

It’s not so much that I’ve been hesitating to speak on this. Ask my husband, it’s all I’ve been talking about.

It’s that I’m angry, and when I speak out of anger I usually set the conversation on fire with insults, disrespect, and overall meanness. That’s a weakness of mine that I’ve been working on.

I don’t want to hurl insults. I don’t want to disrespect anyone.

I want something to be done. I look around, and I see my neurodivergent family being affected with me that this book was allowed to be conceived.

Think I’m exaggerating? Check out these links. Go ahead, I’ll wait:

http://tagaught.net/boycotttosiri-1/

http://www.autistichoya.com/2017/12/boycotttosiri-letter-to-judith-newman.html

https://boren.blog/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/amp/

https://beckettsthoughts.tumblr.com/post/168304914386/the-problems-with-to-siri-with-love

https://bookriot.com/2017/12/05/an-open-letter-to-harpercollins-about-to-siri-with-love/

https://www.autismforums.com/threads/people-on-the-autism-spectrum-are-boycotting-to-siri-with-love.22974/

https://americanbadassactivists.org/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/

https://americanbadassactivists.org/2017/12/06/bookriot-an-open-letter-to-harpercollins-about-to-siri-with-love-boycotttosiri/

http://www.squidalicious.com/2017/12/boycotttosiri-needed-to-happen-because.html

https://www.bustle.com/p/why-i-believe-to-siri-with-love-by-judith-newman-is-a-book-that-does-incredible-damage-to-the-autistic-community-6780420

https://somegirlwithabraid.wordpress.com/2017/11/29/autistic-moments-autistics-should-be-sterilized/

https://elizabethroderick.wordpress.com/2017/12/07/review-of-to-siri-with-love-by-judith-newman/

https://aspi.blog/2017/12/08/links-pics-and-a-thunderclap/

https://writeabledreams.wordpress.com/2017/12/06/an-autistics-thoughts-on-to-siri-with-love-by-judith-newman/

https://themighty.com/2017/12/to-siri-with-love-boycott-judith-newman-autism-vastectomy/

http://talesbytheunexpected.be/books/book-analysis-to-siri-with-love-by-judith-newman/

https://culturess.com/2017/12/07/autistic-readers-boycott-to-siri-with-love-autism-moms-love-letter-to-her-son/

http://observer.com/2017/12/autism-to-siri-with-love-book-criticism/

http://www.thinkingautismguide.com/2017/12/why-to-siri-with-love-is-wrecking-ball.html 

https://visualvox.wordpress.com/2017/12/12/the-virulent-tosiriwithlove-debate-our-very-own-autistic-zombie-movie-drama/

https://navigatinglifemyjourney.wordpress.com/2017/12/10/stand-with-us-boycotttosiri/

https://sg.news.yahoo.com/people-autism-spectrum-boycotting-apos-195931360.html

http://unstrangemind.com/an-open-letter-to-jon-stewart-concerning-boycotttosiri/

It’s a lot, right? Is it overwhelming? It should be.

I myself have been hesitating to read the book. I’ve been actively taking part in the boycott and haven’t emotionally invested in obtaining a free copy yet. I’ve been repeatedly triggered with clips and snips in the #BoycottToSiri tag on Twitter though, and it’s shaken me to my bones. When I read it, I’ll do another post/book review.

This book is peppered with insults and bad ideas disguised as humor that read a lot like subliminal messaging: “How do I say, ‘I’m sterilizing my son’ without sounding like a eugenicist?” By itself it’s disgusting, but read the passage that follows and one could almost think that this line of thinking is acceptable and not actually eugenics (except she’s only lying to herself because it still totally is). Eugenics. In 2017. That’s incredibly dangerous, especially to the easily influenced who might explore sterilization options in their states or other countries.

There was another bit that struck me; it’s the part where she describes Gus’s reactions to thunderstorms. She tells us how he hides in the closet.

I felt a pang of recognition, I used to hide in the closet during thunderstorms! All the way up until 11 or 12! It wasn’t so much that I was scared of being flooded on, or anything like that, it’s that thunderstorms are LOUD. It was much quieter in the closet and less stimuli. That much sound is bound to wake up fear in a person who’s brain responds to the environment.

Anyway, she follows up that tidbit about her son’s fear with saying that every time he does it she wishes she had done pregnancy yoga.

Cue the sound of a stricken nerve, and a series of questions: Did my mom ever feel that way about my unreasonable fears? Is that what goes through the minds of people when an autistic person is startled by the environment, apathy? Is that apathy toward autistic people the reason this book is a best seller? Why isn’t the reaction to help Gus not to be afraid of thunderstorms?

I feel that way about every line that I’ve read that’s been posted by someone else. I question what empathy means to those people. If we can be seen as unfeeling, unworthy of consideration, unable to comprehend exclusion, how are we the ones who are unempathetic?

I look around and I see waves of people scurrying behind the anti-bullying movement, with no real, emotional understanding of what bullying is.

It’s not just physical fights. It’s not just emotional abuse. It’s pointing and laughing. It’s giving negative attention. It’s writing a book about autistic people, without autistic people, at their expense.

It’s devastating to me that this book is a best seller. It’s not just the author’s fault. She’s a product of autism propaganda, a mouthpiece for the neurotypicals who think they need a translator for autistic people. No, this is bigger than her.

This is a social failure. Neurotypicals already think negatively of autistic people.

To write a book about how hard it is to deal with your autistic son, detailing and dissecting his “weird” habits as though he were something to be studied. Then to say “[the book] wasn’t written for autistic people”. The nerve! Doesn’t she understand that this is a DIRECT EXAMPLE OF SOCIAL EXCLUSION? This the worst type of bullying!!! And to add that it’s supposed to be funny and we don’t get the joke

Sit down. I’m about to rap some knowledge.

The number one killer of autistic adults is suicide. As many as 67% of us have experienced suicidal thoughts. For most of us, they generally stem for a desire to be accepted for who we are: flaws, special interests, and all. Acceptance is a basic human need, even in autistic people. How does this book, which normalizes neurotypical negative thoughts about autistic people, make room for acceptance?

Why is it that neurotypicals don’t understand that they are just as perplexing to us as we are to them? Why don’t neurotypicals understand it’s harder to ACTUALLY deal with excess stimuli and allistic nonsense that it is to WATCH somebody deal with excess stimuli and allistic nonsense?

One has to wonder what the agent, the editor, the publisher, were thinking when they allowed this travesty to waltz out of their publication and into the hands of hungry readers curious about a love letter to a machine. Dollar signs, probably. Autism is a hot topic, with Atypical, The Good Doctor, Matthew Mcconaughey, Jon Stewart, Night of Too Many Stars.

The platform is seriously lacking autistic voices. It’s lacking autistic women’s voices. It’s lacking autistic people of color’s voices. It’s lacking autistic LGBT+ voices. We don’t need books written by people like Judith Newman.

We need to tear down the social construct that allows for people like Judith to speak over autistic people, and rebuild it with autistic voices front and center.

Autistic voices need to be in the media, politics, comedy, literature, Hollywood.

Are you autistic and thinking of running for office in 2018 or 2019? Do it.

Start writing, start speaking. Accommodations, be damned! Whether or not it’s too loud, too bright, too much, we are stronger together than we ever are apart. We need to boost each other up, and demonstrate how to respect an autistic person for who they are, regardless of “functioning level”.

Autistic people need to create the status quo. Get involved, speak for yourself, and then listen. We need to amplify each other’s voices. We deserve to speak about how we get treated, where we want research to focus, how we can be included in society, how we’re portrayed in the media and television.

Our siblings, parents, lovers, spouses, friends, we need you now more than ever. We need you to be better than Judith. We need you to appreciate us for who we are, respect our special interests, respect our autonomy, love us, stand with us, and give us the mic instead of answering for us.

It’s our time to speak now.

 

 

 

Beating Self-Isolation and Negative Thoughts

I’ve been secluding myself from my friends and family and have been unusually internet quiet.

I haven’t really been texting back, I haven’t gone anywhere. I see my friends once every couple of months, I don’t really talk to anyone at work (save for a funny comment every hour or so), I haven’t posted on Facebook, my twitter feed is basically retweets, and my Instagram has been stagnant (save for a recent post where my husband and I suggested we were going to steal a child).

I haven’t really written too much, and I haven’t painted anything since that apple in August.

I’ve basically disappeared.

My husband has been worried about me, and I’ve decided to say something about my silence.

I’ve been depressed.

I haven’t had the will to reply or create. My thoughts are a carousel of self-doubt, panic and anxiety, and every time I would get an idea, I would tell myself that I don’t have anything to say on the subject.

Except that I’ve had loads to say about a lot of topics and I’ve been oppressing myself.

I’ve been silent because I don’t like myself. I crave the self-acceptance I had when I started this venture, and although feelings are a choice, I haven’t been able to jump out of this spinning wheel of madness.

I tell myself that I can make a difference with what I have to say, only to reply to myself that my viewpoint doesn’t matter.

I’ve been struggling with thoughts that I don’t matter.

Social situations have been making me extra nervous, and I hesitate to engage. I don’t necessarily wish to be sought out, as I feel like my feelings are contagious, and I would hate to spread my negativity.

My period of artistic solitude has turned into a maddeningly depressive isolation.

Shaking myself out of it isn’t doing any good, but I wanted to tell everyone who feels this way that you’re not alone.

It’s dangerous to act on the feelings that self-imposed isolation brings with it. If I acted on the thoughts that I don’t matter, my actions would surely lead to my suicide.

It’s about fighting yourself, for yourself, until you win. Sometimes to win you need medicine. Sometimes you need therapy. Sometimes you need friends and family to center you again. Sometimes you just need time to collect your good thoughts and put your brain back in order.

Whatever it is you need to win, seek it out. You’re worth it.

Isolation breeds social anxiety, which makes socializing feel awkward, and makes you want to socialize less and feeds the thoughts that come with isolation.

To beat the crippling anxiety of wanting to socialize and the debilitating self-doubt, you have to push yourself out of your comfort zone.

For me, pushing myself out of my comfort zone is writing about why I haven’t been writing and pushing myself to do the things that need to be done. The more productive I am, the better I feel about myself and the less likely I am to fall into old patterns of seclusion.

If you or someone you know is having suicidal thoughts, you’re not alone. Call the Suicide Prevention Lifeline and speak to someone.

Autism and the Hispanic Community

The quickest growing population in the United States has the lowest autism diagnosis rates, according to several studies, and the big question on everyone’s mind is: Why?

Well, according to pediatricians across the country, the primary reason for low diagnosis rates in Hispanics is due to the confusion of the questions on the screening questionnaire.

The solution presented to this is a verbal Q&A between the doctors and the parents of these children. Yippie for future kids on the spectrum!!

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But wait, what exactly does that mean?

It means the answer is to why Hispanics don’t have higher diagnosis numbers is because of language barriers and semantics. As great as this new research is, it does open the doors for a whole mess of questions, especially for teens and adults on the spectrum.

Right now, the statistic is 1 in 68 kids has autism, up from 1 in 100. That doesn’t mean there isn’t an epidemic, though. We’re just getting better at recognizing it. Low Latino diagnosis isn’t limited to the United States, though. Currently, diagnosis numbers range about 1 in 115 children in Mexico. Compared to 1 in 68, this is quite a gap.

Undiagnosed kids still grow up to be autistic adults, and a lot of them get married and have babies. In fact, many adults learn about autism when they’re raising their children, and their children are diagnosed.

The autistic adult world statistics are somber and scary, with 1 in 63 newly diagnosed adults having suicidal thoughts. Finding out about autism as an adult makes for a complicated life story, filled with sometimes horrifying revelations about one’s own childhood experiences way later in life and catastrophic misunderstandings.

If there are verbal misunderstandings in autistic patients and cultural barriers in regards to language and semantics preventing a diagnosis of autism, what about the undiagnosed autistic Hispanic teens and adults who are past the age for a verbal screening for autism? What happens when autistic Hispanics who don’t know they have autism… go to the doctor?

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How Does it Feel to be Undiagnosed?

As a teen and young adult, I lost many friendships because my responses were taken the wrong way, or I said something too stupid for them to think it wasn’t on purpose. I got better at catching offense on my feet. Still, I hated living with the anxiety of knowing that I might say something offensive at any given moment and having to be socially prepared for my own “stupidity.” I wanted so desperately for people to think I was a nice person, but I was just known as bitchy and bossy, and you could only see my “care” if you knew what it looked like. I will say this about myself, though: I hate being misunderstood. Even if it took a fight for you to understand me, I made people understand me because I wasn’t coming from the wrong place, and to me, people HAD to know that.

I was a Hispanic child with no diagnosis and a whole mess of weird issues. I knew I was different from the kids at school because I was always lost in social situations. But I was book smart, and I would read six fiction books or so a week. I learned so many different words for so many mixed feelings I always had. Still, I didn’t understand social nuance in a way that allowed me to communicate anything unless I was upset or frustrated. Once I got mad enough, the words would flow, and I didn’t have the emotional maturity to tailor myself or sometimes even feel apologetic. Once I got out how I felt, the anxiety of trying to get all my words together went away, and I felt ten times better. Most of the time, I wasn’t even mad anymore. I didn’t know anything about mental health disorders.

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How do Hispanic People on the Spectrum Fall Through the Cracks?

My parents never took me to a psychologist. I was too much like other family members, so I was given coping mechanisms, not medicine. I appreciated this so much because it made me stronger, but I can’t help but wonder what would’ve happened to me if I got my diagnosis sooner instead of later. Would I have realized my talents sooner in life, accepted myself sooner, loved myself sooner, instead of wasting so much time trying to fit into a world that wasn’t made for me?

A diagnosis makes life easier for the patient. Still, because of the burden on the family, people of importance are saying they aren’t sure now how beneficial having an early diagnosis is. In other words, having an autistic child makes life harder on the family, because coordinating doctor visits and therapy, along with handling meltdowns and social misunderstandings makes life more difficult for the parent.

My parents didn’t take me to a psychiatrist because life is hard, and they were divorced. They both just corrected my terrible social skills as I messed up. And although they handled that very differently, they loved me for who I was.

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Being Undiagnosed as an Adult and Going to the Doctor

I went through summer before I was twenty, where I felt nauseous every time I ate, and a lot of times, I would throw up. I went to the doctor and tried to explain my symptoms to him. He said I had Irritable Bowel Syndrome. Irritable Bowel Syndrome is a disorder that affects the large intestine, with symptoms including diarrhea, constipation, cramping, bloating, and gas. There is no known cause. I was confused as to why he thought my problem had to do with my large intestine when my primary reason for the visit was vomiting. From my stomach. I did my homework and found out that a diagnosis of Irritable Bowel Syndrome is basically a doctor hack for giving up on why your belly aches because it is actually an imbalance of gut neurotransmitters. Eventually, a nurse practitioner diagnosed me with GERD and a hyper acidic stomach.

Another time, when I was around 24, I went to the doctor was because having trouble eating. Even the thought was making me nauseous, and a few times, I threw up. When he asked me what I ate that day, I answered, “A bag of chips.” For some reason, he thought that meant I was anorexic instead of the host of other things it could’ve been. In talking with a nutritionist, it was uncovered that I was experiencing quite a bit of stress that was exacerbating my previous GERD diagnosis and that I needed to eat smaller and more often. Alexithymia is the worst.

Did I mention that people on the spectrum often suffer from gastrointestinal disorders?

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What can Physicians and Latino Patients do to help each other?

My advice to physicians? Talk to your patients and read. So quickly, doctors rush to treat the symptoms and not figure out the cause. Observe your patient’s demeanor, review their medical history, and pull out your textbooks. There are too many specialists in the field, and the generalists don’t know enough. Do your research about cultural preferences.

My advice to patients? Speak up. It doesn’t matter if you’re autistic or not. Everyone is a patient at some point or another, and no one knows your body like you do. If you’re feeling pain or you notice new or weird patterns with your body, it’s up to YOU to tell your doctor. People die unnecessarily every day because this kind of information is not exchanged. Tell your doctor about any weird symptoms you might have during your annual physicals.

Undiagnosed autistic Hispanic patients need to be treated with respect and listened to, just like neurotypical patients. The Latino population needs doctors who will show us that they are on our side. Verbal questionnaires are a great place to start.

America, as a society, is just barely understanding how mental health and medical health are actually hand-in-hand. People are starting to figure out that there is no such thing as normal, and everyday research is getting closer and closer to better treatments for people with autism.