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Autism Self-Diagnosis Tools

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Autistic individuals are turning to self-diagnosis to explain their autism features, sometimes based on better awareness, sometimes based on what they see on social media. But how accurate are these autism diagnostic tools? They range anywhere from tik-tok videos all the way to a tool called the RAADS-R which has been described as a valid diagnostic measure. Unfortunately, as discussed by scientist Alexandra Sturm who looked closely at what this tool measures, it’s probably not a true diagnostic measure. However, diagnosis for adults is hard to obtain, Dr. Sturm provides suggestions on what to do if you are curious about an autism diagnosis and don’t know where to turn.

The RAADS can be found here: https://embrace-autism.com/raads-r/

https://www.tandfonline.com/doi/full/10.1080/09515089.2024.2327823

https://pubmed.ncbi.nlm.nih.gov/38305196/

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The Trouble with Transitions

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This podcast has not covered transition from adolescence to adulthood in the past, probably because there has not been a lot of research in this area. Luckily, recently there has been a surge of investigations and scientifically – supported interventions and recommendations for individuals who are transitioning to adulthood. This podcast reviews the latest in where the gaps are and identified some (of many) areas that need further research. Here are the references that will be helpful.

https://pubmed.ncbi.nlm.nih.gov/38493400/

https://pubmed.ncbi.nlm.nih.gov/38501189/

https://pubmed.ncbi.nlm.nih.gov/38423723/

https://www.autismspeaks.org/tool-kit/transition-tool-kit

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Suicide, self-harm and genetics in autism

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This week’s podcast covers two new papers of interest to the autism community. First, another study showing increase in self harm and suicide in those with autism – no new news there – but a new discovery this week showed a vulnerability of females with a diagnosis. The study also explores the lower rate of suicide in those with IDD but higher rate of self harm in this same group. Second, the mystery of autism genetics is slowly unveiled. Why is rare variation so influential in an autism diagnosis? As it turns out those with rare variation also have common variation, piling on the genetic liability in this group. Common variation is also uniquely linked to language delay in autism, so is this a core feature? Links below are the scientific articles as well as resources to support those dealing with mental health problems in the autistic community.

Mental health links:

https://vkc.vumc.org/assets/files/resources/mental-health-toolkit.pdf

https://www.camh.ca/-/media/files/cundill-centre/depression-and-autism-full-pdf.pdf

https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism_Section-9.pdf

https://www.azrieli-anc.com/autism-mental-healthhttps://www.autism.org.uk/advice-and-guidance/topics/mental-health/suicide#How%20do%20I%20get%20help%20and%20support

Articles:

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2808056

Genetics study is OPEN ACCESS: https://www.pnas.org/doi/abs/10.1073/pnas.2215632120?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmed

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The importance of a childhood diagnosis

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Two recent papers suggest that a childhood diagnosis of ASD is important for adulthood quality of life and well being. But another one points out that it isn’t the only thing, or even the primary factor, involved in improved quality of life and well-being as autistic adults age. There are others, like comorbid mental health problems, demographic factors like gender and current age. These studies were conducted by autistic researchers and did an amazing thing – one tried to replicate the other. The media got the point of these findings wrong (shocker) so today’s #ASFpodcast explains what they mean.

https://journals.sagepub.com/doi/pdf/10.1177/13623613231173056

https://journals.sagepub.com/doi/pdf/10.1177/13623613221086700?casa_token=Pt_EcbUzuDQAAAAA:_qVIXsQGRxWgoSOp4-kpLdohAr6CiB5lFYbhx8kK5omusM4rfHTjeyuzSLbxPh1OFftAc4j8BkuzCA

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296439/

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One key to better mental health: cognitive flexibility

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Stressful life events, among other things, affect autistics more than those who are typically developing. Why? What would cause this vulnerability? New studies suggest that cognitive inflexibility may be the key. Autistic people tend to have problems with cognitive flexibility. As a whole, they show problems with flexible thinking, changing direction and being adaptable to new situations. This is clearly tied to insistence on sameness, a core feature of ASD. Can anything help? Research needs to look at the link between improving cognitive flexibility and mental health, but in the meantime, there are things that can be done to improve skills in this area. Check out a few below.

https://pubmed.ncbi.nlm.nih.gov/36196666/

https://pubmed.ncbi.nlm.nih.gov/36113122/

https://researchautism.org/cognitive-flexibility-keeping-thinking-limber-and-flexible/
Cognitive Rigidity in Autism

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Little things to help the autism community

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We’ve heard a lot about social robots – do they help? One or two studies are not going to answer this, but a systematic review and meta analysis will! It turns out when you combined all the data, they do help in social abilities, but not other areas. This is how technology can help those with autism, especially technology which can be adapted to address the heterogeneity across the spectrum. And what about more subtle changes in the environment like light, sound, the built environment in classrooms and the home? Are there things that can be done that should be taken into account when these things are being built or modified? Again, a review article can help decipher all of the little studies that have been published over the year. Listen to specific recommendations for builders, architects, and even you as you make your home more autism friendly.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0269800

https://journals.sagepub.com/doi/10.1177/13623613221102753?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

https://lukerosen212.medium.com/the-supreme-courts-decision-impact-on-the-rare-genetic-disease-community-f9ac22bd1411

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Pasta, music pieces and pills

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This week, the #ASFpodcast explores different types of interventions for which the core autism features are not necessarily the target, but those that enhance quality of life and provide help for irritability and emotional dysregulation. They include cooking, music therapies and antipsychotic medications. While they may not be effective in core autism features, they may help in other ways.

https://www.jaacap.org/article/S0890-8567(22)00198-8/fulltext

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004381.pub4/full

https://www.sciencedirect.com/science/article/abs/pii/S0891422222000890?via%3Dihub

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Tooth brushing: It’s not for sissies

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Parents or caregivers of children with ASD sometimes have a lot of difficulty helping their child brush their teeth. Parents and caregivers of children not on the spectrum have difficulty helping their child brush their teeth. By working with families on an individual level, coaching, encouraging and breaking down each of the steps of tooth brushing into something manageable, a group of Medicaid-eligible parents helped their children learn these skills on some level by the end of the study. Incredibly, 93% of parents who are trying to do it all with less, stayed in the program and felt more confident about their abilities. This study also used a randomized clinical trial design which compared the training and coaching with just those who got some toothbrushes and toothpastes in the mail. In this week’s #ASFpodcast, you get to hear from the leaders and the therapists who helped these families, what they did, and what worked. Join me with Dr. Eric Butter, Kelly Birmingham and Dr. Rachel Fenning to hear more about this study.

https://pubmed.ncbi.nlm.nih.gov/35211746/

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Help for those with minimal verbal ability

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On this week’s ASF weekly science podcast, we provide a recent review on influences of speech and language both in those with ASD who are verbally fluent, as those who have minimal verbal ability. What does the brain look like in those with minimal verbal ability and are there interventions to help improve social communication ability in those with not just minimal verbal ability but also cognitive disability? What are some early markers or behaviors that predict understanding and communicating? Listen to learn more.

https://pubmed.ncbi.nlm.nih.gov/32909382/

https://pubmed.ncbi.nlm.nih.gov/32881387/

https://pubmed.ncbi.nlm.nih.gov/32827357/

https://pubmed.ncbi.nlm.nih.gov/32812191/

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Psychiatric decompensation and autism: Two words you never want to hear together

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A series of three scientific articles explore the link between the onset of psychiatric symptoms in adolescence in people with Phelan McDermid Syndrome, or PMS.  PMS is caused by a mutation in the SHANK3 gene, leading to a wide range of medical, behavioral and intellectual challenges, as well as autism spectrum disorder.  Scientists used a broad literature review as well as the PMS patient registry to better describe what was going on, and a group at Duke compiled a case series of girls affected that were responsive to treatment.  While so far this decompensation as a result of onset of psychiatric illness has only been documented in PMS, families across the spectrum should be aware so they can seek immediate help for their child if they see similar symptoms.

https://www.ncbi.nlm.nih.gov/pubmed/32050889

https://www.ncbi.nlm.nih.gov/pubmed/31879555

https://www.ncbi.nlm.nih.gov/pubmed/32015180