Autism Spectrum Disorder, ADHD and Dyspraxia
The Spectrum is a magazine written for and by autistic people and we are always looking for new contributors.
Whether you have an article, piece of artwork or a poem you would like to be considered for inclusion, please send it in and it could appear in a subsequent issue.
Nearly 2,000 adults and hundreds of children with learning disabilities or autism are being held in mental health units, with an average stay of more than five years, despite repeated abuse scandals. Justine Smith reports
Shortly after her 18th birthday, Danielle Attree woke in the night to be confronted by several men. She was handcuffed and bundled into a secure van. When she lashed out, fighting for her life as they arrived at their destination, she was violently restrained, drugged and locked in a room with only a mattress on the floor.
I am absolutely exhausted I have been awake until 2am this morning trying to get people to sign Olivers petition
After being in parliament yesterday It was made clear to me that I need as many signatures as possible to get this debated, as things stand right now, it is at a head teachers discretion what training teachers have or don’t. That to me, is not acceptable.
If you care about children who find it difficult to learn or be included in school, It is VITAL members of LinkedIn take 30 seconds to sign the petition. I can only do so much for your children If you want real change, you must do your bit to help xx
This consultation considers the extent to which the Oliver McGowan code of practice on statutory learning disability and autism training (the code) provides Care Quality Commission (CQC) registered providers with the necessary guidance to meet the legislative requirement introduced by section 181 of the Health and Care Act 2022. The effect of the new requirement is that CQC-registered providers must ensure their staff receive learning disability and autism training appropriate to their role.
The views and feedback gathered from this consultation will inform the final version of the code to be laid in Parliament. We are seeking your views on the draft code and its provisions.
This consultation will run for a period of 12 weeks and is open to anyone with an interest in the draft code.
You can respond:
Every neurodivergent student should be able to get the education they need. Many neurodivergent students are being failed and denied the most basic support, or adjustments at school.
Too many educators lack the knowledge and skills in understanding these communities of neurodivergent people
I would like the Government to pass into law that all staff in educational settings must be trained on learning disabilities and autism (ASD). There are already requirements for this for health and social care staff.
The Oliver McGowan Mandatory Training on Learning Disability and Autism is the Government’s recommended and preferred training package for health and social care staff. The training is available and has been formally evaluated. It has received funding from the Government and could easily be adapted to meet the needs of staff based in educational settings.
Education Report 2023Published on 30 May 2023
It’s the little things, being able to use a quiet room, not having to wear a uniform that feels uncomfortable or being able to use an exit pass to leave the classroom when you’re too overwhelmed to speak. These simple things can change now and can make such a difference.
That is what I have found from six months of working on the National Autistic Society’s new Education report. I’m Jake, and I work in the policy team.
We are aware that Axia currently does not use the Quantitative Behavioural (QB) test to assess for Attention Deficit Hyperactivity Disorder (ADHD) and wanted to provide you with an overview as of why.
The QB test is a diagnostic screening tool that uses age and gender matched comparisons to assess your impulsivity, ability to concentrate and your movement. Whilst there are many strengths of the QB test including its ability to allow for the assessment of ADHD symptoms outside of the clinic in the home settings (Ulberstad et al., 2020), it is also important to consider its limiting factors. Several studies have questioned its ability to discriminate between the ADHD presentations included in the DSM-5-TR (Predominately Inattentive, Predominately Hyperactive-Impulsive, and Combined) (Hult et al., 2018). It also must be noted that the QB test is a screening tool, which means it can be helpful to indicate potential symptoms of ADHD, but it does not necessarily provide enough information to make a full diagnosis. Furthermore, it may not be accessible for individuals with visual impairments or those who may heavily mask and can compensate for their difficulties for short periods of time (the QB test usually takes 15-20 minutes to complete). Many questions have also been raised regarding the measurements taken from the QB test, with journal articles indicating it may measure cognitive ability, rather than purely ADHD related symptoms (Johansson et al., 2021).
The methods used for an ADHD assessment at Axia, align with the current NICE guidelines, which do not state that it is a requirement for QB testing to be carried out, please see here for further specifications: https://www.nice.org.uk/guidance/ng87/chapter/Recommendations#diagnosis.
Our neurodevelopmental assessments are informed by the Partnership model whereby parents are viewed as the experts on their children and individual’s experts on themselves. All assessments are conducted by qualified healthcare professionals in a semi-structured interview style format that aims to highlight the behaviour and symptoms of ADHD in the different domains and settings of the person’s everyday life. By adopting the Partnership model, we can share mutual expertise that is in the room in the spirit of openness, honesty and genuineness. This also allows us to explore the factors that may limit an ADHD diagnosis (or may not be capture by singular use of a screening/diagnostic tools) such as an individual masking their ADHD: hiding their symptoms of ADHD from other people. Additionally, we also obtain a full developmental history of the individual and collate other observer reports and assessments of the person’s personal state provided from other services. This further consolidates the diagnostic outcome.
We hope this provides you a better understanding of our assessment process, particularly concerning an ADHD diagnosis.
References:
Hult, N., Kadesjö, J., Kadesjö, B., Gillberg, C., & Billstedt, E. (2018). ADHD and the QbTest: diagnostic validity of QbTest. Journal of attention disorders, 22(11), 1074-1080.
Johansson, V., Noren Selinus, E., Kuja-Halkola, R., Lundström, S., Durbeej, N., Anckarsäter, H., Lichtenstein, P., & Hellner, C. (2021). The quantified behavioral test failed to differentiate ADHD in adolescents with neurodevelopmental problems. Journal of attention disorders, 25(3), 312-321.
Ulberstad, F., Boström, H., Chavanon, M. L., Knollmann, M., Wiley, J., Christiansen, H., & Thorell, L. B. (2020). Objective measurement of attention deficit hyperactivity disorder symptoms outside the clinic using the QbCheck: Reliability and validity. International Journal of Methods in Psychiatric Research, 29(2), e1822.
The article below was written by Carly Jones, who recently was kind enough to be our guest speaker for our February PDSG. You can watch that here.
Hello everyone! How are you and how has 2023 been for you so far? I hope you are hanging in there despite the dip in temperatures of late – it does feel as if summer isn’t too long away in the calendar!
If your family, like mine, hasn’t yet ventured back to the airport for a foreign holiday since pre-pandemic times, then a family holiday may feel even more uncertain than it already did before (and let’s face it, travelling and SEN needs were a tad tricky to plan even before the pandemic, right?!).
The “Anna Kennedy Online Charity” created the “Autism Hero Awards” as an opportunity to showcase and celebrate the excellence taking place in the world of Autism. This is a unique opportunity to celebrate and showcase accomplishments as well as enhancing Autism awareness and acceptance.
We know that our Post-Diagnostic Support Group (PDSG) meetings are quite unique, being “co-produced” since their inception nearly a decade ago with those diagnosed through Axia, and evolving into a “hybrid” of both “in person” and “virtual” attendance over recent years.
There are twelve categories in total for this year, and we are hoping to receive a nomination for the “Support group of the Year Award”, so if any one who attends our PDSG events (either visiting our new venue at Chester Race Course or attending virtually over Zoom) would like to nominate us, there is a link to the form below.
Closing date for entries Friday 2nd June 2023.
Thank you.
Health service managers in south-west England say new restrictions are needed because of a huge rise in waiting lists
NHS managers in south-west England have imposed new rules that could deny autism assessments to thousands of children in a move that parents say “puts children at genuine risk”.
At the start of this month, NHS commissioners in Bristol, North Somerset and South Gloucestershire announced new referral criteria for children’s autism assessments, effective immediately with no notice or consultation.
NHS managers say the new restrictions are needed because of a 350% rise in local children waiting for an autism assessment since the height of the pandemic, with waiting times exceeding two years.
Chris meets Anton, a teaching assistant and trance DJ with a deep love of Middlesbrough FC, and Ethan, a 19-year-old student and aspiring rapper from Essex. He helps them make films to reveal to their friends and classmates how Anton feels about change and Ethan about hypersensitivity to noise.
Chris also meets Dr Luke Beardon, an expert in autistic hypersensitivity, and Dr Punit Shah, who helps him to understand both Anton’s restrictive and repetitive behaviours and Chris’s own need for order in his life.
The event will offer strategies to autonomously support autistic children, teens and adults through environmental change and accommodation.
About this Event
The event will look at key features of the environment through a multi disciplinary lens and consider how we can support sensory safety and comfort, autistic communication, regulation and wellbeing.
Participants will
so we can ensure the persons perspective is put front and centre always.
Different from similar events because of its multidisciplinary perspective, active collaboration between autistic individuals and allies and environmental accommodation focus, this event is for parents and family members, educators, therapists such as occupational therapists, Speech and Language Therapists, psychologists, social workers, social care staff, early intervention specialists and anyone who is passionate about autistic wellbeing.
Ticket include
We are very pleased to announce, that after many months of work, Axia are now fully operational in our new premises at Brookside Farm Cottage!
Below is the new address, directions on how to find us, and a video walk around which Dream kindly filmed to show people our new offices.
Directions to:
Axia ASD Ltd
Brookside Farm Cottage
Parkgate Road
Mollington
Chester
CH1 6JS
By Car
The M53, M56, M6 and A483 are all in close proximity to Chester providing excellent transport links.
If you are travelling to us by car, either search for ‘Axia ASD Ltd’ in Google Maps, or search ‘Brookside Farm Cottage, Parkgate Road’ in Apple Maps. We are located next to the Wheatsheaf pub and the King Kabs taxi rank, and there is a small bus stop directly outside our gate. If you drive past us, please do not worry as there is somewhere that you can turn around regardless of which direction you are coming from.
There is a long red brick wall with grey gates outside our building.
Please see below image of the entrance to Axia:
From Chester Railway Station / Bus Interchange
f travelling by train, get off at Chester Railway Station. The railway station is a short taxi ride to Axia. There is a taxi rank outside the train station.
Alternatively, you may wish to get the bus from Chester Bus Interchange. This is around a twelve minute walk away from the railway station. If you would prefer not to walk, you can get the X4 Mold bus from stop S4 at the railway station which will take you to Chester Bus Interchange. This takes around 4 minutes.
From here, you should get the number 22 bus (for West Kirby) and get off at the Fiddler’s Lane bus stop. This will take around ten minutes. You will pass the Axia building just as you are pulling into this bus stop. Please take care when crossing this road as there is a 50mph speed limit.
There is a long red brick wall with grey gates outside our building.
What to do if you Arrive Early
If you arrive early for your appointment, you may wish to:
If you have any questions you can contact our admin team on 01244 567656 or enquiries@axia-asd.co.uk
A Wander Around with Dream
Last week, the Chancellor, Jeremy Hunt, laid out the Government’s plans for spending. He promised that disability benefits would rise in line with inflation, and that additional funding would be made available to health, social care and education.
This funding is welcome, but it is just a drop in the ocean considering the social care system has been in a dire state for years. There are still long delays to getting a diagnosis and support. Meanwhile, more autistic people are reaching crisis point and ending up stuck in mental health hospitals.
This is a scandal. We are urging the Government to set out how this funding will be used to:
At a time when many people are struggling, autistic people and their families must not be forgotten. We will be in touch soon about you can help us to keep pushing for change. Together, we can create a world that works for autistic people.
Best wishes,
Beth, Campaigns Team
BBC Sounds – Room 5, Series 2, Ep4: Joel
Released On: 01 Feb 2022 – Available for over a year
‘I stare at my own reflection, trying to remind myself that I’m not dead.’
Joel never understood why he felt different to other people. Then a revelation in India sets him on a journey to find answers.
In Room 5, Helena Merriman interviews people who – like her – were changed by a diagnosis.
BBC Sounds – Room 5, Series 2, Ep1: Holly
Released On: 01 Nov 2022 – Available for over a year
Aged 39, Holly Smale was a successful author – the creator of the bestselling series of children’s books, Geek Girl. One afternoon, while talking to her therapist, Holly breaks down, says she feels broken. And so begins her journey to understand why she’s always felt different to other people.
We track back through Holly’s difficult childhood, her short-lived modelling career and her traumatic time at university – all the way to the moment she was diagnosed as autistic.
Psychologist Dr Sarah Lister Brook – Clinical Director for the National Autistic Society – tells us why so many autistic girls and women still go undiagnosed. And Holly Smale shares some life advice with a newly diagnosed eight-year-old girl.
In Room 5, Helena Merriman interviews people who – like her – were changed by a diagnosis.
We hope to welcome as many of you as possible at the RacecourseWe shall be there to welcome youLuke is an amazing person and presenterSee you Wednesday!
