#autistic life
Spectrum 10k - Autism Scientific Research Study (UK)
To all my autistic friends, I want to know what your thoughts are on this new scientific research study. If you don’t know what Spectrum 10k is, it is a scientific study of autistic people’s DNA and information. A quote from their website states: “We aim to better understand how genetic and environmental factors affect the wellbeing of autistic individuals, including their physical and mental health. We hope this increased understanding will lead to an improvement in the quality of support and care for autistic people and their families.” They ask for autistic people to take part in a survey as well as send them a DNA sample.
A lot of autistic people are incredibly worried about this study, claiming that it is eugenics and is created to find a cure. However on their website they state that they will not look for a cure for autism and that they are ethically opposed to any form of eugenics.
Another concern is who will have access to the data collected, and if it could end up in the wrong hands and be used for eugenics in the future. They’re response to this was: “To access any anonymised data collected by us researchers will have to submit a full proposal, which then will have to be approved by us. To be approved it must align with our aims of no cure, no eugenics, not harmful etc. and have value to science and the autism community.” They also say that autistic people are part of their committee which makes the decisions about who to share data with. They don’t state how many autistic people are on this committee however.
People are also worried that Autism Speaks is involved but apparently they are not, they stated: “Autism Speaks is not involved with our project, we have not spoken to them about it. The Wellcome Trust funds many projects but we are not working with Autism Speaks and have no plans to do so.”
Coming from a non-biased point of view, what are the positives and negatives of this study?
The positives that I can see would be that they are exploring co-occurring conditions. About this they stated: “Genetic data can help identify meaningful subgroups of autistic individuals. This can allow for different types of support. This includes rare syndromic forms of autism with specific co-occurring conditions. One example is the gene CHD8 where autistic individuals are more likely to have severe gut difficulties. Some co-occurring conditions like epilepsy and certain forms of gut difficulties are overwhelmingly genetic. Understanding the genes underlying these conditions can help develop better medical support targeting these conditions in autistic people.” They say that through this research they will improve the wellbeing and support for autistic people which if true, is very much needed. Autistic people are very misunderstood in society and this could possibly raise more awareness and acceptance and create better support for autistic people.
The negatives would of course be that autistic people are sharing their DNA which will go into a database that could possibly be used to research some type of cure. Also there is concern about minors (those under 16) being forced to take part in the research by parents and carers. There is the argument that minors are unable to consent to a study like this, especially since their DNA sample will be stored and possibly used in other studies in the future. Part of me understands why they want data from a variety of ages, however, I think the study should only be for adults (16+) to participate in. I don’t feel that children are able to consent to a research study like this and I don’t like the fact that parents and carers can force their children to participate.
After doing my own research on this study I am still wary and unsure whether or not I would personally want to participate. Part of me wants to because I love science and I think more understanding of autism and co-occurring conditions is needed. The other part of me is worried that this could be used to look for a way of preventing autism or curing it. We need to understand why exactly this research study has been created and what the end goal is. We need to be confident that this is not a cover up for a eugenics study. I think I am willing to trust what is being said, that they are against eugenics and are not looking for a cure. I know that could just be my trusting nature (which can get me into trouble sometimes) but I like to think that the intentions of this study are pure and the goal is to help get better support for autistic people and their families.
Let me know what you think about Spectrum 10k. You are welcome to share any opinions and feelings you have whether they are positive or negative. I have linked the website incase anyone wants to have a more detailed look, they have a list of FAQs and explain more about the study there.
I got my braces yesterday!! So far it’s actually been okay. The itchy sensation is horrible but that should only last the first week. Sensory wise I’m coping okay. I’ve found exercising is a good distraction from the discomfort. I’m already starting to get used to them and I actually enjoy cleaning them.
So I downloaded tinder for the first time ever and I’m finding it super awkward and difficult I feel like I would vibe better with someone who is also autistic or neurodivergent in some way. I matched with a few people who I’ve tried to talk to but the conversation isn’t really flowing. I’m awful at social interactions and never know what to say Does anyone have any tips? Or maybe there’s a better dating app I could try? I want to find a genuine connection with someone.
My parents took me to Alton Towers this week to celebrate my birthday and I had a great time but it took a lot out of me. I’ve been doing pretty much nothing for the past 3 days trying to recover. Usually I would feel guilty for being so unproductive but I know that this is necessary for me to prevent going into autistic burnout. I’m usually very good on rollercoasters and they never make me feel sick but since my overdose I’ve been suffering from headaches and nausea so I wasn’t able to do as many rollercoasters as I usually would. I had some follow up bloods done and they showed that I was fighting an infection but they don’t know where the infection is. I’ve taken a covid test just incase although my doctor said they don’t think it is covid because my symptoms don’t match. Oh my god the covid test was horrible!!! It is an awful experience for anyone with sensory issues
anxiety brain: do you need to panic?
me, just vibing and minding my own business: what? no, i’m fine
anxiety brain: okay, i believe you *slams panic button with full force*
me, no longer vibing: WHY WOULD YOU DO THAT?
anxiety brain, crying: I’M BABY
tumblr changed their icon (i know it was ages ago shhh) and I Need It Changed Back
my parents want me to go to an “autism skills group” (their words, not mine) and to me the idea of going to a skills group for autistic people to “learn how to cope/ learn skills” feels ableist because it implies that autistic coping skills or autistic skills aren’t as good as or valid in comparison to neurotypical skills/coping methods. is it just me or is this ableist?
Anything that tries to curb stimming, curb special interests, or exposes you to unpleasent sensory stimuli is ableism
Though other autistic people have lots of insight as to how to cope, so you might learn from them
If its a choice, go and see how you feel and if you think its just a “normal” camp then leave
yeah i used to be in “normal” camp and individual therapy and it was terrible, i worry thats what this will be but ill try anyway
my parents want me to go to an “autism skills group” (their words, not mine) and to me the idea of going to a skills group for autistic people to “learn how to cope/ learn skills” feels ableist because it implies that autistic coping skills or autistic skills aren’t as good as or valid in comparison to neurotypical skills/coping methods. is it just me or is this ableist?
can someone explain why neurotypicals get angry at you for your tone sometimes but not always
autistic culture is having a set of music you go through over and over for months or years
So, I’m a semiverbal NYC based autism. I realized today that I go through a lot of things without talking so I’d thought I’d share. I also completely rely on wakling and public transport to get places. Feel free to add!
1. If you’re buying something off a cart and you can physically grab it, just grab it and hold it up to the cashier. They will give you the price and you can pay them and give them change all without talking. If you can smile at them before walking away, they usually don’t give a shit that you didn’t say thank you.
2. This also applies to bodegas, drug stores, etc. If they ask cash or card, you can just hand them the proper one. Yes and no questions can be answered with nodding for yes and shaking for no.
3. If I can’t hear someone or understand what they are saying, I usually will just point my ear towards them and point at it. Usually, they’ll just repeat it at and eventually I can figure it out.
4. You are totally allowed to just ignore strangers trying to talk to you. If you can get some over ear ear defenders or headphones, they are more likely to leave you alone. If someone asks for directions and you don’t know or don’t have the energy to give it, you are totally allowed to shake your head no. You are allowed to just keep walking. If someone won’t leave you alone, you are totally allowed to give them the middle finger.
5. If you can stand it, I highly recommend carrying a small backpack with sensory survival supplies. You probably know what works best for you but this is what I carry: medications that are useful to me (including over the counter stuff like ibuprofen and antacid), small collection of stim toys, ear defenders/headphones, phone/phone charger, sunglasses, compression gloves, a mini umbrella, something related to a current special interest, a water bottle, extra layers or a pair of shorts depending on weather, etc. I do alter this based on wear I’m going and what I’m willing to carry and so on.
6. A pollution mask can be a wonder for blocking city smells. You can even put a dab of an essential oil you like inside it if you choose. Then, you’re entire day can smell like that. Though, I hate the smell of things with a smell so just the pollution mask tends to work.
7. At least in NYC, if you need to stim, stim. Cities can be overwhelming and so can life. Stimming can help you regulate your body and if you need to just do it. There is probably something weirder happening then you stimming and even if not, people tend to mind their own damn business8. If you use an AAC app, you can just use it. People tend to figure it out. I personally like Speech Assistant cause it’s free and the show button makes the text really big so you can just put it in front of someone. This tends to work better for me then the synthesized voice because people have difficulty hearing that.
9. If you need a place to chill during normal hours, I highly recommend public libraries. They tend to be temperature regulated, open to the public and quiet. Plus, they have books to read. All the benefits
This! All of it.
