#autistickeely
Happy Autism Acceptance Week to all my amazing fellow autistic friends!! ❤️❤️❤️
Autistic people are underappreciated, undervalued and underestimated members of society. We are treated as if there is something wrong with us, we are told we need to be “cured”, we are discriminated against and bullied for the way our brains are wired. We don’t just deserve awareness, we deserve acceptance. Life for autistic people will never change unless we are accepted and appreciated in society for the amazingly wonderful people we are. We deserve more than just awareness!!!
So much has happened in my life in the past six months, it’s been crazy!! I started college and I am studying animal health/care!! It’s been so amazing. The college I go to has hundreds of different types of animals we get to work with! We learn all about health checking animals, caring for animals, cleaning out enclosures, the biology of animals and veterinary care. It’s such a perfect course for me! I have lots of exams and practical assessments coming up which I spend most of my free time studying for so that is why I’ve not been on here much. I am also doing work experience at a dog groomers!! I will post lots of pictures when I get the chance
I’m getting pretty sick and tired of having to defend my right to exist to neurotypicals. Why as autistic people do we constantly have to explain why we shouldn’t be cured or why we shouldn’t be eradicated. It’s so fucked up, we are human beings and have the same rights as any other person on this planet. If you are neurotypical and support curing autism, please just consider how that makes us autistic people feel. It’s so incredibly hurtful and scary to think that our rights to exist are being demolished.
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.
Something I just want to add: If you see that an autistic person has decided to take part in the study it is NOT OKAY to bully them or shame them for their decision. I’ve seen comments on Twitter from autistics who have decided to take part and have been attacked by other autistics who disagree with the study. They were accused of supporting eugenics and the eradication and abortion of autistic people which is absolutely disgusting. It’s not okay to shame people like that, you don’t know their reasons for participating and you have no right to judge. You can have your opinion on the study but don’t accuse people of those sorts of things, it’s really just uncalled for.
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.
Mabel hasn’t moved from this box all day. I’m so jealous, I too want to sit and sleep in a box all day.
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
