Spectrum Journeys helping to ease the autism experience

Freya Lucas

Mar 12, 2019

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“I would come home from appointments to find a bag full of chocolates, flowers and a card that cheered us on and affirmed our child. This always blew me away because at my core, I felt like no one understood what was happening and we were alone.”

From this time of confusion and a feeling of being alone, Spectrum Journeys Founder Kate Johnson has created a community of support for families who are navigating the complex space of living with autism spectrum disorder (ASD). One of the core programs offered through Spectrum Journeys is the Blessing Bags program, which gifts parents and carers with little luxuries, designed to smooth the way. The Sector Assistant Editor Freya Lucas spoke with Kate about the path that led her to establish Spectrum Journeys, and the lessons she learnt along the way.

Interviewee:Kate Johnson, Spectrum Journeys Founder

Organisation: Spectrum Journeys

Date: 04/02//2019

Topics: community engagement, autism spectrum disorder, business development

Freya: Hi Kate, thanks for taking the time to respond to our questions. The Blessing Bag initiative sounds really interesting, but before we get there, can you tell me about Spectrum Journeys and what service you offer to the community?

Kate: Spectrum Journeys started in my lounge room six years ago and really stemmed from a need to have a range of education and support services for those inside and outside the autism spectrum disorder (ASD) community.

We offer low-cost professional development workshops from leading local professionals for those wanting to learn more about ASD, and a range of options for those caring for someone living with ASD such as carer workhops, carer conselling and carer drop-in services, in addition to

pilot programs to support carers such as our Newly Diagnosed group and Advocacy and Mentoring Program, plus Dads Connect, and the Blessing Bag Project.

We have also produced two resources – Free to Be Me – a roadmap to rediscovering a child’s world without sensory sensitivity by Occupational Therapist, Hannah Gamble, and our carer resource The Advocacy Project.

Freya: Terrific, thanks Kate. Can you tell me about the team who work with you at Spectrum Journeys? From what I understand, there’s a mix of allied health professionals, and those who have lived experience with the ASD journey.

Kate: At Spectrum Journeys our vision centres on two words - equip and empower. Why? With 50 per cent of our team having children on the Autism Spectrum, and the other 50 per cent having experience supporting children through service provision, education and therapy, it is deeply personal to us. We believe that children on the Autism Spectrum should be seen from a strengths viewpoint and supported well so that they can flourish. We are passionate about seeing families thrive and for educational settings to be safe, warm and beautifully inclusive so that everyone gets an opportunity to learn, grow and participate well.

Freya: Thanks Kate, it sounds as though you’re very busy! I love the concept of paying it forward which I saw you speak about on social media - do you have any other examples of how services might “pay it forward” for their children and families?

Kate: We are firm believers in paying it forward and using what we have to make a difference. One simple way of paying it forward is to embrace ASD and provide lots of positive information for families about ASD through workshops and groups. Often, education teams have access to great program information and families may not receive this type of information from therapists.

Freya: How did the idea for Blessing Bags specifically come about?

Kate: When my son was diagnosed back in 2010, I was quite lost. Despite being in the community sector for years, I had no idea about early intervention, ASD or accessing the right types of support. Everything that could have gone wrong, did go wrong and often, I would come home from appointments to find a bag full of chocolates, flowers and a card that cheered us on and affirmed our child. This always blew me away because at my core, I felt like no one understood what was happening and we were alone.

That feeling of belonging and acceptance stayed with me, and at our first Spectrum Journeys meeting in my lounge room, the concept of Blessing Bags was suggested - small bags with gifts such as candles, toiletries, and words of encouragement, designed to make parents and carers new to the world of ASD feel that same sense of support that I’d experienced. We make these bags for as many carers as we can. It is a passion of ours to show carers and families that people are in their corner and they are not alone.

Freya: It’s such a lovely concept, thanks Kate. What sort of involvement do you have from the community in supporting the various Spectrum Journeys projects?

Kate: We have worked really hard to build community connections as we are a charity with a small budget. The majority of our programs have volunteer support behind them. Our community joins us at Blessing Bag creation nights, for example We simply put up an event page on facebook and share it and we have had over 180 volunteers come over 12 months to make cards, decorate Blessing Bags and pack the bags.

Sometimes, our volunteers are carers who want to be around people who adore them and cheer them on, and they use the events as respite. We have educators who are passionate about supporting our service after attending our PD events. We have general members of the community who are looking for ways to serve others. It is a really lovely mix!

Freya: How did you set up your partnership with Max Brown Real Estate?

Kate: We never really switch off from promoting our work and trying to get support. It has been incredibly hard to attract funding through various sources and so we got creative and bold. My husband and I bought and sold through Max Brown and got to know some of the agents. I then submitted a proposal and highlighted the impact they could make by supporting us behind the scenes. They have been incredible and gone over and above.

We initially asked for them to have Blessing Bag collection points at their offices as a way to help us to get more donations. We invited their teams to come and attend blessing bag creation nights. We followed up with their staff by giving them a morning tea to say thank you. This built relationship and then we were able to connect them in with other projects. For us, it was all about relationship building!

Freya: Thanks Kate. If services were wanting to undertake a similar project in their community, what tips would you offer them?

Kate: Know your community! What do they need and what can you do?

Can you do a carers event in your community and get business support as a once a year thing or are you able to dedicate time each week to doing more? These are all questions to ask before you start. Engage with your community of carers and build a team of volunteers to support you.

There may be incredible events in your community that you can partner with, so it is worth exploring.

Freya: And what about services who aren’t in Victoria, how can they support this initiative?

Kate: We would love support from across Australia! When services do a themed day or a free dress up day, they can donate all the gold coins to Spectrum Journeys to help our service to support more people.

We are currently producing free webinars and funds raised could support this project to go further so families and educators (especially regionally!) have access to incredibly practical information for free.

Freya: Great, thanks for your time today Kate. Kate: You’re welcome.

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