ACT for Autism

He is very vigilant after being physically assaulted by school staff and peers…No matter who it is. His trust level is like zero. - Ng-Cordell et al. (2022) Frontiers in Psychiatry 13, page 9.


There are many causes of trauma for an Autistic child, and one is being restrained when distressed by school or medical staff. The adults may be trying to protect individuals and property and physically subdue someone who is extremely agitated. However, attempting physical restraint can lead to increased agitation, physical harm and trauma. The trauma can subsequently be expressed as a lack of trust in caregivers.

Next Steps in Understanding Autism and Trauma
To further explore the association between autism and trauma, we have developed two new events: Trauma and Autistic Children and Teens and Trauma and Autistic Adults. Through these events, participants will gain insight into:

Children and Teens:
https://attwoodandgarnettevents.com/product/webcast-event-trauma-and-autistic-children-and-teens-25-october-2024/

Adults:
https://attwoodandgarnettevents.com/product/webcast-event-trauma-and-autistic-adults-25-october-2024/

A quick skim, important for self managers.

Welcome to share: Sam's Initial key take-aways and perspectives on the new Support Lists released today - which start on Thursday!
WARNING: I am not a lawyer. This is not legal advice and is a very quick summary of some of the things that I think participants need to know now.

🗓️ Effective transition periods
• Plan managers must follow new rules by 2 November.
• Participants have 12 months to make changes without incurring a debt.
• If something From the outlist is already stated in your current plan or the AAT ruled it in, you will still be allowed to spend your money on that, but only for the life of the current plan.
• This legislation is transitional, so it only stays in place while we co design and develop the final Rules, so make sure you share your perspectives.
💵 Financial adjustments
• Participants will not owe money for spending less than $1,500 on non-approved items if it's a mistake.
• This rule applies if it happens fewer than 3 times (you get 2 warnings)
👥 Support coordination
• Participants can only use funds for support coordination if it is Stated in their NDIS plan.
• This includes self-managing participants.
🛠️ Replacement support determinations
• The old substitution rule has been updated.
• Participants can ask for exceptions for:
o Household items sold in stores.
o Smartwatches, tablets, or phones used for accessibility.
🚗 Specialized services
• Driver training:
o Now potentially available for participants with different disabilities.
o It must be stated in the participant's plan.
o It must be provided by a special driving instructor.
🐕 Assistance animals:
• Spending for assistance animals or community support only applies if stated in the plan.
________________________________________
🔄 Updates to the OUTlist (non-claimable items)
💇 Hairdressing services:
• Hair washing at the hairdresser is not banned now.
• Manicures, pedicures, artificial nails and other beauty services are still excluded.
🚫 Unchanged exclusions:
• Electricity generators remain on the list.
• Legal costs are now clearly excluded. This is an issue for self-managing participants who need legal advice on employment contracts, etc.
🏠 Impact on living arrangements:
• Rent is still on the outlist.
• This likely affects individual living options (ILO) and increases costs.
• Housemates providing in-home support must now be paid as support workers, which will change many shared housing setups and make them much more expensive.
🍽️ Meal delivery services:
• Excluded unless food and preparation costs are listed separately.
🏋️ Gym memberships:
• Still excluded when used for recreation.
💑 Dating and relationship services:
• Remain excluded, with no clear definition for what this means.
🎟️ Conference fees:
• Now excluded. Training sessions around disability related needs appear to remain claimable
👨‍🏫 Coaching services:
• Life, career, and cultural coaching remain excluded.
• Support workers may be able to support similar executive functioning outcomes.
👶 Childcare services:
• After-school care, au pairs, and school holiday programs are excluded.
📬 Postal services:
• Non-claimable.
• This will affect assistive technology delivery claims.
🔧 New funding provisions
• And surprisingly, NDIS funds might now be able to be used for property repairs for disability-related damages.
There is a lot more information in these lists. I have just pulled out the things that stuck out to me as different from the draft lists or particularly. unwieldy or silly.
This stuff is all law on Thursday this week!!! I will put a longer form version of this in the comments.

To learn more come and join me (Sam Paior) and Chris Coombes. at our "Can I still buy it?" workshop next week: https://www.thegrowingspace.com.au/events/can-i-still-buy-it-1110/
________________________________________
📖 Hard words glossary
📜 Substitution: Replacing one thing with another.
🚫 Exclusion: Something not allowed or funded.
👨‍🏫 Coaching: Training to help improve skills.

pic desc: A promotional poster for the Can I still buy it? Workshop, which says new ndis laws and what they mean for your plan spending. It shows a picture of a shopping cart with things in it. The Growing Space logo and little avatars for Chris Coombes and Sam Paior

A major NDIS change has just been finalised. Here's what you need to know Significant changes to the National Disability Insurance Scheme start kicking in this week. Here's what you need to know.

Nice article from SWAN re NDIS
https://www.swanautism.org.au/ndis-changes-october-2024/?fbclid=IwY2xjawFqaVBleHRuA2FlbQIxMQABHdPdv15WF3muQpiDjK878lheHR7433xI9SyOUUXoGfblzmMXhiZSfpQYZg_aem_GYKNS1ved3bUjNEzS2LeYw

Today we started sending emails to all participants and registered providers about the upcoming changes to NDIS legislation. Check your inbox - it's us, not junk!

It will take about a week to reach everyone. You can find the email on our website here: https://ow.ly/BE3650TnQyL

You view the Auslan video, transcript and Easy Read version of the email here: https://ow.ly/FOLK50TnQyM

Changes will start from 3 October 2024. Stay informed by visiting our website for the latest updates.

Well said, Square Peg Round Hole :)

https://www.watoday.com.au/national/western-australia/discrimination-complaints-surge-at-wa-schools-20240909-p5k92v.html

One of our clients hears electricity too. He was non verbal and used picture exchange communication to request for lights to be turned off.... in other rooms! (He could hear they were on and it irritated him). And yes, they were fluoro lights!

https://www.facebook.com/share/r/WPXQqnaJCqw2EuLY/?mibextid=oFDknk

Amazing program for autistic adults (with capacity for learning through spoken and written language) residing in some regional and remote areas of WA.

https://www.autismcrc.com.au/sylvia-rodger-academy/autistic-identity?utm_source=acrc&utm_medium=email&utm_campaign=eNewsAugust_2024&j=2158609&sfmc_sub=89355035&l=103_HTML&u=54923885&mid=7286130&jb=1001&fbclid=IwY2xjawFOGfNleHRuA2FlbQIxMQABHaH2UaA6d7F7tTMRbJl6BkgO1ca5KDAES5CX3Upbq0SIgbaFi6IIxmALEw_aem_WgCAa4BU-TYu4nloqbvCLg

National Roadmap to Improve the Health and Mental Health of Autistic People We are developing a National Roadmap to Improve the Health and Mental Health of Autistic People. This roadmap will address serious health inequities faced by autistic people in Australia.

He had just turned three years old. It was Mother’s Day weekend. My third one.

I picked him up from daycare and his provider said...’He refused to put his hand in paint and I don’t do art projects for kids. You don’t care about my work.’

I remember watching all the kids toddle up to their moms carrying little messily wrapped packages. Huge smiles from the kids, so excited to show off their homemade gift.

My son was sitting in the dirt driveway. Picking up the sand, sifting it through his hands, watching it fall. Repeat.

I was crushed. I was angry. I was stunned. Hurt too. I scooped up my son, buckled him in his car seat and home we went. That ride wasn’t the first I drove with tears streaming down my face. Staring forward. So he couldn’t see me.

Every minute or so I’d sneak a peak in the rear view mirror, willing him to say something. Anything.

Silence.

That day is burned in my memory. I’m still angry about it. I mean, come on, he was three...not six. All kids need help with art at age three. She couldn’t have held a paint brush in his hand for two strokes or poured some glue on a piece of paper? Hell, I would have taken a blank piece. Anything actually.

My son has never been an art kid. He’s never had a drawing or project sent home. And as he got older I appreciated not seeing fake work. It’s funny though. As parents. We don’t know what we want half the time. I think we just want it to be easier really. For our kids. For our hearts.

This photo was sent to me a while back. He’s trying. Now I know it was probably 60 seconds with cheering, clapping and encouragement. But who cares. I love that he tried. And I’m thankful for the people in his life that still try with him.

Thank you to the people who don’t give up on kids like mine. It means more than you’ll ever know to parents like me.

It’s necessary…

There are a couple of PDA training workshops for teachers coming up in Perth in August and September :) Sat 24th August is our ACT for Autism workshop at UWA (www.actforautism.com.au/workshops) co-hosted with Dr. Gemma, Autism Consultant and we would also like to give a shout out to Heidi Brandis who has been supporting the PDA community tirelessly for much longer than we have :)

She has recently launched PDA Training Australia and started doing formal training and is offering a face to face workshop for parents and educators on Friday 13th September, see flyer.

There is a fine line between establishing a perceived "low demand environment" which could accidentally increase anxiety and understanding how to create an environment that is low demand because it is carefully planned around how an individual's autism impacts their sympathetic nervous system (fight/flight etc system). Only understanding PDA and associated behaviours as a 'can't, not a won't' will professionals learn how to build capacity because the brain is able to relax and not feel under threat (nearly) all the time, often despite the good intention of others.

In short, come along to this workshop if you work in a school and want to help children with ASD and a PDA profile feel better more often, but also know that you need strategies to ensure that unsafe behaviours are reduced and prevented. Families, carers and therapists working in effective teams always welcome too!

https://www.actforautism.com.au/workshops/uwa-introduction-to-pathological-demand-avoidance-pda-5mmwc

What an impressive publication! And super proud to have Kat, artist and illustrator extraordinaire, supporting our clients with direct services here in Perth :)

Bicycle Anxiety Bicycle Anxiety

In the Autism community not judging what 'should' make people feel happy or sad is very important ;)

At ACT for Autism our staff have a 'Friday funny' shared with the team.

But this one both brings a smile and is celebratory, so posting here so the sheer loveliness can be enjoyed by more. How fabulous are kids?

One of our clients (shared with permission) is learning self-care skills, but is very scared and sensory averse to soft textures on their hands... so they are struggling to toilet independently.

"The toilet paper is too small, and I can't see, so I might get it on my hand."

Until this week, when a completely independent solution was found and was discovered by a parent who sent us this pic.

And that has led us all to thinking... 'actually... toilet paper IS too small.' Maybe we have an inventor in the making (come on Bloom's Taxonomy!).

Anyway, goal achieved. Mission 'find soft kitchen paper towel' commences... Assistive tech anyone (OTs) !? Environmental reasonable adjustment anyone (teachers) !? Ethical antecedent based intervention (behaviour therapist) ?!

We love our kids!

Happy Mothers Day everyone :)

Get in quick - this is for teams supporting students with PDA who are hoping to attend school successfully, or restart school after a period of non-attendance.

https://www.actforautism.com.au/workshops

Yesterday, I went on a field trip to the Minnesota Zoo with my oldest son Cooper and his class. It was pretty amazing really.

He is 13 and autistic and it’s a really big deal that his class goes on field trips because not all special education programs do. But it’s so good. It’s so good for the kids and the community and the businesses and the parents.

Cooper and I walked together every second of the way. We held hands or he held onto my arm. He was never out of my sight.

Let me tell you he did amazing. I can’t believe how far he has come in situations that used to be impossible.

As we wandered I found myself wondering. Wondering if it will always be this way...the two of us. A mother and son the same height. Walking along. Communicating in their own language. Near but far from the people.

With my second son I find myself walking by my myself these days. He’s always running ahead or lost in a sea of friends. And when he does hold his old mom’s hand I take note because I know deep down it’s coming to an end.

My third, he is my truly independent, want to grow up immediately, I do it myself mama, son. He hasn't needed me for years. And he is only three. He has always climbed to the tallest slide and ran down the road after the neighborhood kids.

But not my Cooper. He has always needed me differently.

When he was a toddler, I followed behind because wandering was his favorite. At four I climbed through the McDonald's Play Palace. At five, I hid under a table with him during Christmas dinner. At six I held his hands around a plastic bat during Miracle League and ran the bases with him in tow.

At nearly 41, I always get in the pool. I still slide down every slide, although my knees are starting to feel it more these days. And I lower myself to the ground during a meltdown to keep him safe.

I encourage. I help him communicate with other kids. I am a buffer of sound. A gasp at trains. I lead the way. I follow behind.

And I watch the other parents. In the beginning, I remember I used to feel jealous. Wishing I could stand with a coffee in hand watching my kids play. And as the years went on, I wish I could sit in the lobby of Speech Therapy and relax on my phone instead of helping the therapist engage with my son.

It's different now. I am different. He is different. And yet in the smallest ways we may seem frozen. Together. His body getting bigger. The wrinkles on my face appearing.

His progress is undeniable though. Because we got to go to the zoo. With people who understand our life. And we got to have a fun day.

I don't know if I will ever be the mom who sits, even though there are days I wish I could. I don't think that is my role in this story.

And that's okay. Because truly, honestly, I have never been prouder of him.

Because we went to the zoo. And I got to be there.

Sometimes there are not simple solutions.

https://theconversation.com/choice-and-control-the-ndis-was-designed-to-give-participants-choice-but-mandatory-registration-could-threaten-this-224505

Deadline is on Tuesday :) Please consider submitting a response. We are commenting that children with complex support needs who require intensive support are often cared for by parents who have the lowest levels of capacity to be a 'squeaky wheel' as they do not have the privilege of being able to have a quick shower or bathroom break - let alone time to write an email.

We are also commenting in support of a 'common sense' model of disability - advocating for society to be more inclusive and have a broader understanding of neurodivergence and the ways individuals may behave, communicate and socialise.

Being inclusive and adopting a team approach to meet children's disability related support needs can often be confronting for professionals, particularly those in the education and health sectors, who have been trained to follow protocols and frameworks that simply are not appropriate for many autistic children; ineffective at best, unethical and traumatising at worst.

Most importantly is that we believe in supporting each individual at their point of need - from our perspective there is unnecessary division in the autism community. We have yet to be convinced that there is 'one autistic voice' and whilst we will advocate for all the children we have the privilege of serving - we do not think we 'know' what other autistic children require to ensure their capacity building support needs are met.

Community consultation We warmly invite input from all members of the community regarding the development of the Framework. You can share your views as an individual or as an organisation.

https://www.sciencealert.com/autism-can-boost-cognitive-performance-and-we-may-finally-know-why

Autism Can Boost Cognitive Performance, And We May Finally Know Why Autism is a neurodevelopmental difference associated with specific experiences and characteristics.