Nine-year-old Alex Cullenbine was diagnosed with autism spectrum disorder at six years old – but his mum, Donji, said she knew from 18 months that something was different.

He avoided making eye contact, was slow to develop speech and was overly sensitive to sounds.

Since his diagnosis, he had received behavioural therapy one or two times a week but he remained gaze avoidant.

However, a few weeks after he started taking part in a small trial funded by the US government, at Stanford University, Donji noticed a difference in her son.

“He was starting to flick glances to my eyes and then dart his gaze away. At first it happened a few times a day, which was absolutely stunning. I remember catching my breath and almost doing a mental double-take.

“It gradually progressed to a handful of times per day, particularly when he wanted me to listen to him with my full undivided attention.”

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The Autism Act (2009) places a duty on the Secretary of State for Health and Social Care to publish a strategy for meeting the needs of autistic adults in England, and to review it from time to time. England’s first Adult Autism Strategy, Fulfilling and Rewarding Lives, was published in 2010, with commitment from Ministers across government to transform the support for and experience of autistic people. In April 2014, the Strategy was updated with the publication of
Think Autism, supported by revised Statutory Guidance in March 2015.

In 2017, it was agreed that the arrangements for overseeing implementation of the Strategy should be refreshed. In some areas, it was agreed with stakeholders that progress was not as quick as envisaged, and that there was scope to streamline the set of actions and commitments and to re-confirm ownership of specific actions to focus on those that would best realise the objectives of the Strategy.

The Strategy itself has not changed, but the implementation activities required to deliver its intended outcomes, and who will do what, have been clarified. This has returned the focus to delivering what is required by the Autism Act and Statutory Guidance, in a realistic and measurable way.

A revised governance model

A revised governance model to oversee implementation of the Strategy has been established,which centres on 19 overarching strategic objectives. These were identified from the existing Strategy, and have a direct read across to the core aims of the Autism Act and the associated Statutory Guidance. The 19 strategic objectives have been grouped into five domains:
Measuring, Understanding and Reporting the needs of people with autism; Workforce Development; Health, Care and Wellbeing; Specific Support; and Participation in the Local Community. There will be five Task and Finish Groups (TFG), one for each domain, which will be responsible for coordinating the delivery of the relevant objectives, and tracking progress of the associated actions. A diagram of the model can be found in Annex A.

Each TFG will be composed of members representing organisations which have the levers,authority and ability to take action to realise the objectives in each specific area. The Chair of each TFG represents the organisation best placed to facilitate overall progress in that domain, and they will be able to influence progress against their objectives. Additionally, at least two
members of each group will be self-advocates to ensure that the voice of people affected ultimately by the work of the TFGs is represented. The terms of reference for each group clearly sets out each member’s role and responsibilities to drive forward progress in their area.

A new Executive Group will oversee the progress of the TFGs, coordinate actions across the Strategy as a whole and monitor and report on the overall progress against the strategic objectives. Progress, risks and issues from the TFGs will be reported into the executive group. This will help to ensure that activities across the groups are joined up. Every year, the executive group will present the progress in implementing the Strategy to an annual accountability
meeting, chaired by a Department of Health and Social Care Minister.

The aims and the objectives of the Think Autism Strategy stand but the revised governance model is expected to help drive progress this year before a formal review of the Strategy in 2019

What does adulthood look like to teenagers with autism?

A researcher at the University of Utah went straight to the kids to see what they wanted their future to look like.

Evan and Aaron Newman are about to graduate from high school. Both have autism. Both worry about impending adulthood.

“I’m not ready to deal with strangers a whole bunch. I like having a more familiar setting like with my family.”

“It’s probably, like the scariest thing I’ve ever had looming ahead of me. It’s kind of this big unknown.”

Both were part of the research project seeing how autistic teens understand the transition into adulthood.

University of Utah Assistant Professor Anne Kirby interviewed 27 students.

“So much research is about people on the autism spectrum, but it’s not with them. So it’s not talking to them, it’s not hearing their own voices and their own ideas.”

The kids told Kirby they want good jobs, college, and families

Read the full article here or watch the video below

Dale Grounds, a single father from Nottingham, England has become a literal superhero for his autistic son Reece and other children of Nottingham.

Shannon talks to Emily Iland about “Be Safe The Movie,” a unique video modeling DVD that teaches youth with autism and similar disabilities how to interact safely with the police. Professional ‘Be Safe’ curriculum training for parents and teachers and Interactive Screenings with local law enforcement and youth with disabilities are available as well!

Learn more at www.BeSafeTheMovie.com