You may have heard the saying \u201cWhen you have met one person\nwith autism, you have met one person with autism\u201d. This is certainly true, and through my work\nas a parent volunteer with the National Autistic Society, and by being a member\nof a charity called \u201cThrive\u201d I have met many wonderful children and young\nadults with autism spectrum condition who are all wonderfully unique.<\/p>\n\n\n\n
My son was diagnosed\nwith autism at the age of 3. At that age the most prominent difference between\nhim and his peers was lack of speech. He\nis now 8 and still currently pre-verbal, he has no speech. People are usually quite shocked when I\nexplain that he can\u2019t talk, and I\u2019m sure they must wonder how it\u2019s possible to\nget by without speech. Actually, he\nmanages very well, he uses an iPad which has grid software (pictures\/symbols)\nand he is also very good at using gestures, pointing and giving eye contact\nwhen he has something to say. In fact,\nlack of speech probably has least impact for him compared to the other\nco-morbidities that present themselves alongside his autism.<\/p>\n\n\n\n
He also has sensory processing difficulties, severe anxiety,\nobsessive compulsive disorder, hypermobility and learning differences. These co-morbidities are very common in\npeople with autism spectrum condition, they can impact their lives to various\ndegrees and it may not be obvious that some behaviours may be a result of one\nor more of these conditions. <\/p>\n\n\n\n
Sensory-wise, he is both under and over sensitive in the 7 senses: vision, hearing, taste, smell, touch, proprioception (the perception of body position, which is important for balance agility in movement) and vestibular. This means that he\nstruggles in noisy or bright environments, has a restricted diet, craves deep\npressure and hates light touch. He is\nalso flaps and bounces about a lot. This\nis a self-stimulatory behaviour (STIM) which he does to regulate himself. If he becomes un-regulated, this quickly\nleads to a meltdown. We build activities\ninto his day to keep him regulated, the most effective activities include\nbouncing on a trampoline and swinging on his nest swing. He also loves the water, which really helps\nto relax him. Meltdowns are a lot rarer\nthese days as we\u2019ve learnt to recognise the signs and intervene early before it\nbuilds and reaches the point of no return. \nAt this point he is no longer in control of himself and as hard as it is,\nwe have to let him ride it out in a quiet dark space. Any intervention just makes things\nworse. Autism has taught us a different\napproach to parenting \u2013 we found that the traditional methods do not work and\nonce we accepted that, it was so much easier to move forward.<\/p>\n\n\n\n
His anxiety has certainly increased\nas he\u2019s got older. It really has a\nsignificant impact on his life, often he struggles to get out of the car when\nwe go out. Symbols help a lot to prepare\nhim and manage his expectations, but some days it\u2019s just too much for him. He\nlikes routine and \u201csameness\u201d and unexpected changes to routine can often upset\nhim. Once you\u2019ve taught him a rule\nthough, that\u2019s the rule, which is a mostly positive attribute! The OCD usually\nmanifests itself when he is most anxious. It includes shutting doors,\nclosing\/zipping bags, and putting things back in exactly the same place. They\nmay seem like fairly minor obsessions, but if it\u2019s not right meltdown ensues.<\/p>\n\n\n\n
Hypermobility means that some or all\nof a person\u2019s joints have an unusually large range of movement. My son gets\ntired easily and we depend on a wheelchair for distances or unfamiliar places\nas he can drop to the floor if he gets tired or he freezes to the spot when anxious. We often get surprised looks from strangers\nwhen he jumps out of his wheelchair to run to a swing!<\/p>\n\n\n\n
It\u2019s now 5 years since my son\u2019s\ndiagnosis. Going through diagnosis was\nreally tough, and as a parent there\u2019s the question over \u201clabelling\u201d your child\nwith a diagnosis. From my experience,\ndiagnosis is just the beginning of a journey, and unfortunately in many cases a\nfight to access services. Without diagnosis\nit is incredibly hard to access support for your child. When my son started education he first went to\na mainstream nursery – despite having a diagnosis, and no speech the local\nauthority determined that there was not enough evidence for him to access\nspecialist education. It was obvious from day 1 that this was not the right\neducational setting for him, so I documented everything, all conversations with\nprofessionals and diaries\/videos of my sons behaviours and I shared these with\nthe professionals responsible for his care. \nI followed up on meetings and sent e-mails – I did not rely on\nconversations with educational or health professionals and I always shared\nreports from one with the other. The\nresult was a statement of special educational needs (SEN) stipulating that he\nrequired specialist education.<\/p>\n\n\n\n
My son now attends Ysgol Y Deri, a\nfantastic SEN school in Penarth. The\nteachers are amazing and take wonderfully different approaches to teaching\nwhilst also building sensory activities into his day so that he regulated and\nready to learn. I don\u2019t like the phrase\n\u201clearning difficulties\u201d when describing people on the autistic spectrum. The difficulty comes to those who do not know\nhow to teach autistic children. I prefer\nto say that my son learns differently to his peers. In school he loves to play the harp and the drums\nand enjoys the welsh language. He loves\nthe library and has recently started to attend surfing lessons. He is interacting with his peers and has two\nspecial friends who he giggles with. My\nheart bursts with joy when I think about how much he has achieved. Autism is an intrinsic part of my son, but it\ndoesn\u2019t define him.<\/p>\n","protected":false},"excerpt":{"rendered":"You may have heard the saying \u201cWhen you have met one person with autism, you have met one person with autism\u201d. This is certainly true, and through my work as […]","protected":false},"author":1247,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[7],"tags":[],"class_list":["post-1586","post","type-post","status-publish","format-standard","hentry","category-events"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7dIou-pA","jetpack-related-posts":[{"id":2209,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/world-autism-awareness-2022\/","url_meta":{"origin":1586,"position":0},"title":"World Autism Awareness 2022","author":"Claire Johnson","date":"March 29, 2022","format":false,"excerpt":"This year, World Autism Awareness Week is from 28 March to 3 April, and to mark this we\u2019d like to provide some information and further resources linked to the Centre\u2019s protected characteristic theme for 2021\/2022 \u201cAge\u201d. - Joint blog by Claire Johnson, Head of Quality Assurance and Regulatory Affairs and\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/pexels-tara-winstead-8378752-scaled.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":776,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/too-much-information-world-autism-awareness-week\/","url_meta":{"origin":1586,"position":1},"title":"Too Much Information: World Autism Awareness Week","author":"Andrea Meek","date":"March 30, 2017","format":false,"excerpt":"Background This week (March 27th\u00a0- 2nd April 2017) is World Autism Awareness Week. Claire Johnson (Head of Quality Assurance and Regulatory Affairs\u2013 Centre for Trials Research at\u00a0Cardiff University) gave a very personal presentation to Centre for Trials Research colleagues on autism based on the Too Much Information film by the\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":1176,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/studying-a-phd-in-population-medicine-children-with-autism-spectrum-disorder-asd-and-sensory-processing-sp-difficulties\/","url_meta":{"origin":1586,"position":2},"title":"Studying a PhD in Population Medicine: Children with Autism Spectrum Disorder (ASD) and Sensory Processing (SP) difficulties","author":"Eleni Glarou","date":"November 9, 2018","format":false,"excerpt":"Eleni Glarou is based in the Centre for Trials Research.\u00a0She won a competitive funded place for a PhD in Population Medicine: Understanding multi-party communication in therapy sessions for children with Autism Spectrum Disorder (ASD) and Sensory Processing (SP) difficulties: The value of\u00a0interaction analysis. Tell us a bit about yourself My\u2026","rel":"","context":"In "Population Medicine"","block_context":{"text":"Population Medicine","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/population-medicine\/"},"img":{"alt_text":"Eleni Glarou working with a child using Phonological Awareness techniques.","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/11\/Phonological-Awareness.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/11\/Phonological-Awareness.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/11\/Phonological-Awareness.png?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/11\/Phonological-Awareness.png?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/11\/Phonological-Awareness.png?resize=1050%2C600&ssl=1 3x"},"classes":[]},{"id":859,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/sensory-integration-therapy-trial-for-children-with-autism-spectrum-disorder\/","url_meta":{"origin":1586,"position":3},"title":"Sensory Integration Therapy Trial For Children With Autism Spectrum Disorder","author":"Elizabeth Randell","date":"August 9, 2017","format":false,"excerpt":"Background The SenITA team all very excited as the trial is now going live and open to recruitment. SenITA is a pragmatic randomised controlled trial\u00a0(RCT) of sensory integration therapy (SIT) versus usual care for sensory processing difficulties in autism spectrum disorder (AST) children \u2013 funded by the National Institute of\u2026","rel":"","context":"In "Behaviour Change"","block_context":{"text":"Behaviour Change","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/behaviour-change\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/08\/Sensory-Integration-Therapy-1.jpeg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":1168,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/my-mental-health-journey-so-far\/","url_meta":{"origin":1586,"position":4},"title":"My Mental Health Journey…So Far","author":"Claire Johnson","date":"October 10, 2018","format":false,"excerpt":"My name is Claire Johnson and I\u2019m Head of Quality Assurance and Regulatory Affairs at the Centre for Trials Research Cardiff University.\u00a0 I am also the lead for Equality, Diversity and Inclusivity for the Centre. I am married with two 7 year old boys, one of which was diagnosed with\u2026","rel":"","context":"In "Mind Brain and Neuroscience"","block_context":{"text":"Mind Brain and Neuroscience","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/mind-brain-and-neuroscience\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=525%2C300&ssl=1 1.5x"},"classes":[]},{"id":2373,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/my-gw4-crucible-experience-josie-henley\/","url_meta":{"origin":1586,"position":5},"title":"My GW4 Crucible Experience","author":"Josie Henley","date":"September 29, 2022","format":false,"excerpt":"What is GW4 Crucible and who is it for? 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