Support groups are invaluable resources for the autism community, from individuals on the spectrum, families and professionals. We sat down with Joanne and Jenn from PRISM-DLR, a local support group in the Dún Laoghaire Rathdown area, to talk to them about the work their organisation does for parents of children diagnosed on the spectrum, their campaigns and their vision for their group’s future.
WHERE DID PRISM COME FROM? WHAT INSPIRED YOU TO SET UP THE ORGANISATION IN THE FIRST PLACE?
We were originally set up in November 2014, by a group of parents to provide support and advocacy for families living with autistic children in the Dún Laoghaire-Rathdown area. There was a monthly support group in Stillorgan operating under the Aspire umbrella, but little information about them was available and parents felt that if their child didn’t have Asperger’s Syndrome that they couldn’t attend. The original board members identified many gaps in our geographical area in terms of support for parents, advice and information, relevant training and it was out of this that PRISM was established. Most of the same founding board members are still in place, alongside some new great additions to the team. PRISM is hugely passionate about trying to improve supports for parents and children through peer support and shared experience and knowledge. In our first year, the was towards establishing regular monthly evening and morning support meetings open to parents and carers of autistic children, as well as informative talks and providing family activities; e.g. Lego clubs. More recently, we ran a sibling support drama therapy program for siblings aged 8-12yrs. The reach of PRISM expanded quickly in 2015 and in 2016/2017, we set up another support group called PRISM PDA Ireland. We were starting to recognise that there was a large cohort of parents who were finding that their children presented with ‘atypical’ traits of autism, in particular extreme anxiety based demand avoidance, which require a different approach and set of strategies for parents when supporting their child.
WHAT WOULD BE THE NATURE OF THE SUPPORTS YOU’D PROVIDE? ARE THEY PRIMARILY GEARED TOWARDS PARENTS AND YOUNG ADULTS?
PRISM has its own public Facebook page where we try to give out general information and raise awareness about autism. We have another closed confidential Facebook page specifically for parents and carers seeking advice answers to specific questions. These groups are very active and are mediated by our admin team. We have around 400 active users on the closed group. We’re in contact with local schools and other support services around the county; on our email distribution list we have about 600 individuals who we regularly email with news, updates and relevant information. We also represent service users in the area and sit on CH06 mental health recovery committee, National CAMHS Recovery committee and other HSE review committees. We just recently joined Southside Partnership and have linked in with some great local initiatives that both support and complement our core activities and plans for the future.
Our main aims are primarily to provide parental support, information and guidance and to empower parents to advocate for their children’s educational and vocational needs and access to services. We do not charge a membership fee as we believe that access to support and information should be free and accessible to all.
We regularly host talks and information sessions; one of the biggest challenges we’ve faced is that when families first receive a diagnosis for their child; there is Little to no support or information available from local service providers. So, what we’ve tried to do is bring a variety of free talks into the community to allow parents to access professionals to help them build up their knowledge and confidence. We’ve tried to increase the frequency of these talks, aiming to host at least one every two months. They are usually well attended, so much so that we’ve had to change venues on a few occasions due to numbers.
Some of the parents who attend our talks would also come along to our support group meetings, and we runthree of those on a monthly basis. We schedule meetings for both mornings and evenings as we recognise that many parents work and can only make evenings. Likewise, other parents can only attend while their children are in school. Our PRISM PDA IRELAND support meeting has a more structured format and is facilitated by Educational Psychologist, Dr Alison Doyle. This is because of the nature of the presenting issues and we are also experimenting with a new facilitated group format. So far so good.
A project we’re currently working on is setting up a supported youth group for teens; one of the gaps that we identifierd for teenagers is, certainly in our area anyway, that there are many activities and groups targeting young children, yet not so much for adolescents or young adults. We are currently in talks with Dún Laoghaire-Rathdown County Council Sports Partnership and Youth Arts Centre about getting a PRISM Youth Group off the ground in the New Year. We’ll let you know how this goes.
Much of the work that we’d do would be primarily for supporting parents. There are a number of groups in our area already set up, like Open Spectrum, who provide a variety of autism-specific extra-curricular activities for children. What we were finding was that there’s a huge lack of peer support and information mostly around accessing suitable educational placements and transitions, school refusal, clinical services, benefits and respite. Separate to PRISM there is a Parents of Adults with ASCs group who meet regularly in the area. Knowledge is power and we feel that providing parents with information will empower them in supporting their children in school and in day-to-day living.
As we move forward, we will look to provide peer support groups for teens and young adults. I suppose that’s where we differ from a lot of other ASC groups: our focus is largely about information, knowledge-building and, a bit like yourselves at AsIAm, achieving advocacy for both families and the autistic community at a local level.
We also have a helpline that operates from 10am till 1pm, Monday to Friday, so that’s manned by Marian who will directly take calls, hear out specific concerns, inviting the callers to come to one of our support groups or direct them on to other specialist services.
WHICH OF YOUR SERVICES WOULD YOU SAY IS THE MOST IN DEMAND? WHICH WOULD HAVE THE MOST IMMEDIATE RESULTS?
In terms of parental support, the talks we give, combined with the monthly support groups, certainly would be things where we get the most feedback from. So, we try and get professionals with very good expertise on certain areas and bring them in to share their knowledge.
Aside from that, we have huge interaction with parents in the PDA group because it’s so new, and because there really isn’t anything else in the country in terms of physical groups and meetings and because we’re providing a combination of supports; our PDA support groups are split almost down the middle between the talks and some brainstorming work in groups with those parents.
We see the biggest area of demand for a social support network for teens and young adults and that’s a key area of focus for us going forward.We’d see the biggest area of demand for a social support network for teens and young adults and that’d be a key area going forward for us.
CAN YOU TALK US THROUGH WHAT HAPPENS AT ONE OF YOUR SUPPORT GROUPS? WHAT TYPICALLY HAPPENS AT ONE?
We usually choose a talk based on relevant parent queries and timing. Then, we secure a speaker specialising in the particular topic and advertise via social media, email and very often, we’d put flyers in some the local CAMHs clinics and schools. Afterwards, parents register via Eventbrite and come along to the event which is usually followed by a very engaged Q&A sessions. We have a great cohort of motivated parents who really want to learn and want to get the best from these sessions.
Support groups would function slightly differently. We announce the dates and times via social media and email, you don’t have to register, whoever wants to come can turn up. It usually involves a cup of tea and a chat, and knowledge-sharing. We’d usually have literature and information at those sessions for discussion. Some of the support groups would be quite unstructured and just a chance for people to chat about what’s going on. A PDA support group would be quite different since it’s such a new area. It’d be more information and knowledge-building focused.
WHAT DO YOU THINK ARE THE BIGGEST CHALLENGES FACING PARENTS IN THE DÚN LAOGHAIRE-RATHDOWN AREA, OR INDEED, THE WHOLE COUNTRY IN ACCESSING SUPPORTS FROM THE HEALTH AND EDUCATION SERVICES?
I think the first thing is knowledge, so actively knowing the supports that are available out there is paramount. It’s like feeling your way in the dark for parents of newly diagnosed children. There isn’t a manual you’re handed when you receive a diagnosis that says ‘Here is everything you need to know for the future and a list of follow-up services in your area.’ If you look at primary and secondary schools, there is an ongoing concern around access and availability of support and resources for autistic students, but what is often a bigger issue is the lack of general awareness about autism in those environments, particularly in mainstream schools. The challenge is that these environments are not designed to adequately accommodate autistic students and while staff can be very well-intended, they often just don’t have the training or experience necessary. There is currently no mandate from the DOES for mainstream teachers to upskill in the area of autism and adapt school environments and their teaching approach adequately.
In terms of health professionals working with children with ASCs, the same issues arise with regard to the knowledge, experience and understanding of autism. The most worrying issue of all is in the area of CAMHS services and Early Intervention Services, whereby children and adolescents are discharged from services once they receive an ASC diagnosis. In terms of disability services, the challenges are lengthy waiting times to access services and little services from often poorly resourced multi-disciplinary teams when accepted into a service.
HAVE YOU YOURSELVES RECEIVED SUPPORT AS AN ORGANISATION FOR THE WORK THAT YOU’RE DOING? WOULD YOU ENJOY A HIGH PROFILE IN YOUR LOCAL AREA?
We have a good network or families and supporters and good working relationships with other local groups. We partnered with Open Spectrum to offer a Sibling Support, Drama Therapy programme I last year. We’re now engaged with Southside Partnership and that’s a very new experience for us, where we’re trying to leverage their experience and connections and develop a mutually beneficial working relationship. We are partnering with a local library to establish autism-friendly opening hours and staff trained to support children with ASC. We’ve received some minor community grant support from Dún Laoghaire-Rathdown Council and hope to expand our funding streams this year, particularly as we await our charity status application. We also have fantastic support from our local community and families; there’s an amazing school principal in Holy Family NS in Monkstown just down the road who has offered use of their hall on several occasions for different events.
The PRISM profile has definitely become increasingly recognised in the area, and we’re starting to see that certain professionals and service providers are happy to recommend us to clients both verbally, and in professional reports.
There’s also a new Youth at Risk project that we’re involved in and we’re starting to build relationships there with people across the community. We have also been invited to sit on our local Mental Health and Engagement Forum port to contribute to reviewing their practices.
WHAT WOULD BE YOUR ADVICE FOR PARENTS IN OTHER PARTS OF THE COUNTRY WHO’D BE LOOKING TO SET UP THEIR OWN SUPPORT GROUPS IN THEIR LOCAL COMMUNITY, AND WHO MIGHTN’T KNOW WHERE TO BEGIN?
Pick up the phone and ask – we’re always happy to share our experiences. There are lots of support groups around the country to talk with, we did it when we visited the PDA support group in Dungannon; we also spoke with Triple A in Wicklow, as well as local public representatives. Ask other support groups that you’re aware of for their advice. There’s a huge amount of information available online, websites like yourselves at AsIAm here in Ireland, or the National Autistic Society in Britain.
Have a team of people around you. Setting up a support group can be incredibly rewarding but it can also be incredibly challenging, so having a number of people with you is hugely helpful to share the workload. If someone, for whatever reason, needs to take some time out then there’s someone else available to take their place. We’re lucky to have a fabulous team in PRISM and we support one another not just as colleagues but also personally, and that really makes a big difference.
We also have great relationships with professionals working in the area of autism and national organisations who provide regular talks for us, as well as a bit of advice and signposting when needed.
You should also have a solid idea of what you want your group to be. Be clear about why you’re setting it up and what your aims and objectives are – do you want to do activities, do you want to support parents / autistic individuals with, or do you want to be an information hub. Having a good skill mix in your committee across a few areas is a great help; i.e. community work, PR, marketing, administration and governance/policy development. If there’s a demand for the service in your area, do the research, ask for help and go for it.
This is one individual’s opinion and experience. It does not necessarily reflect AsIAm’s views and positions as an organisation. If you’d like to blog for AsIAm.ie, get in touch by emailing firstname.lastname@example.org.
FURTHER INFORMATION FROM ASIAM.IE
Our information section for family members and carers