AMAA: Reframing Autism

I can just imagine how difficult this question would  have been to answer @GinnyRA thank you for your response. Hospital environments need to improve and accommodate for all people because everyone deserves to access healthcare. 

Also the experience of being "pinballed" is so damaging and it's upsetting to hear about the young person you worked with. Better training is a really tangible thing we can do to improve the experience of going to hospital. 

Time is just running away from us, so I'm going to get to the next question as they are all super important. Here it is: 

I feel there is so much variety with how people can be affected by autism. I have a sibling with 'severe' autism who is non-verbal and it's hard. My family often makes comments about how others who have autism aren't what they would call 'autistic enough' and it's hard for me not to internalise what they say and resent that my sibling is so badly affected such that they can't be independent at all. And when I hear people say autism isn't something that needs to be cured I resent that too because I wish I could communicate with my sibling and that they could have a better quality of life. How do I deal with this resentment?

Okay, this is a tricky question and so I want to start with some basics.

1. It’s worth recognising that every human being belongs in this world just as they are.
2. Every person is worthy of love.
3. Every person is valuable, regardless of what skills they may possess.
4. Every person deserves respect and dignity, and these are not tied to what they offer or contribute.

Regarding communication, remember that all people communicate, and being non-speaking does not mean non-communicative. Communicate with your sibling through your time and your presence. What brings your sibling joy? What can you do to show them that you connect with them, as they are?

Lots of Autistic people experience co-occurring conditions. Some of these fall into the category of medical problems, such as epilepsy or gastrointestinal issues. Some are mental health conditions, such as ADHD or OCD. Some are developmental diagnoses, such as intellectual disability or apraxia, which can prevent or make it difficult to produce mouth words, while some are genetic. Many of these co-occurring conditions can have highly detrimental effects on an Autistic person’s wellbeing and may mean that a person requires a lot of support and accommodations to navigate everyday life. These co-occurring conditions are, however, not inherent parts of Autism, but rather “genetic hitchhikers”, as Autistic advocate Maxfield Sparrow calls them – and also experienced among non-Autistic people. You may find this piece by Maxfield Sparrow on this topic helpful:

http://www.thinkingautismguide.com/2018/08/are-co-occurring-conditions-part-of.html

It can be hard to manage the feelings of resentment that can come with comparison. It is perhaps worth keeping in mind that every Autistic person has gifts and challenges. The challenges some Autistic people face in navigating the world may not be as apparent as others’, but those challenges remain valid.

One thing you can do is listen carefully to your Autistic sibling and other non-speaking Autistic advocates and activists, including Tim Chan, Damon Kirsebom, Amy Sequenzia, the late Mel Baggs, and so many more. There are two incredibly powerful short films I would urge you to watch. Listen was produced by and with numerous non-speaking Autistics who have a very important message about inclusion. In My Language, by Mel Bags, depicts and explains the way in which Mel thought and interacted with the world and makes a strong statement about a person’s value.

https://communicationfirst.org/listen/

https://www.youtube.com/watch?v=JnylM1hI2jc

Thanks for your response @GinnyRA 🙂 It was really helpful and I will look at those links! My brother LOVES music, he'll sit for hours listening to it while rocking in his rocking chair 😄 He can communicate in non verbal ways yeah and sometimes it's not him that gets in the way, rather my ocd 😞 I think my brother has something called pervasive developmental disorder as well but I never got told much about what exactly his diagnoses are. And asking my parents can be difficult. But I don't really need to know exactly what specfiers and diagnoses he's been given because I don't know what good it would do. But I think looking at these links might give me some insight into the different presentations people can have 🙂 I think you did a really good job at answering this question with sensitivity and understanding 🙂

@Lost_Space_Explorer5, you could definitely listen to music with your brother! I'm glad my response provided some things to think and learn about. I have learned so much from listening/reading/watching the work of non-speaking Autistics. My best to you and your brother going forward.

Oh man I kinda relate to that @Lost_Space_Explorer5... when I was a teenager I only really listened to one band but for some reason I didn't want any one else to listen to it/ find out what it was because it was 'mine' lol. 

That story of the CD sounds so lovely  

Totally agree with stating those points @GinnyRA 

I think something really positive to come out of this chat is broadening our views on non-speaking autistic people and having all those resources, advocates and films to learn from is a great start. 

I also really like your point about everyone's varying experience of autism not always being as visible - but they are all valid. We don't know where people have been, what they are going through or how they feel. 

@Lost_Space_Explorer5 haha yes there's many kinds of ways! Anything that's sensorily stimulating, like making noises + touching things + moving your body + etc. Even people that aren't neurodivergent stim by whistling, cracking their knuckles (guilty lol), bouncing their legs, petting something smooth, etc. Since I was a child the main way I stim is look at pictures I really like, like just stare at them? Like pictures of my friends or drawings of my characters... lol I've never heard of anyone else that stims like that but anyway . I also pace a lot, and I love to wear my oodie or something heavy to study with haha.

@Lost_Space_Explorer5, stimming is short for self-stimulatory behaviour and includes all kinds of repetitive movements, vocalisation, touch, smell and more. And yes, it can certainly help to improve one's concentration.

So many pearls of wisdom, thank you @GinnyRA. I've heard so many great things about equine therapy and assistance dogs. Animals are amazing  

I really like what you've said about self-identification @GinnyRA because as you've said the barriers faced in getting a formal diagnosis are challenging. It's so good to know that you can still find yourself within a community and validate your own life experiences. 

It's nice to meet you @GinnyRA! 🙂
Thank you for sharing your story.

I am so excited to chat with Ginny too @WheresMySquishy and I will give you a reminder @xXLexi_Lou122Xx hope you can make it 🙂

Absolutely @Tiny_leaf looking forward to having your company on the night