Save the date for the upcoming Autism Care Pathway Webinar on Thursday, October 24th, 2024. Open to professionals, parents, and carers.
The webinar will feature Professor Jonathan Green presenting new scientific evidence that supports the development of a proactive and integrated autism identification and care model, spanning from early childhood to school support. The evidence includes new models of early identification, the potential use of digital technology, and family-focused dyadic intervention for parents and their children to promote sustained development. This represents a shift from a reactive to a developmentally focused approach in line with the values and aspirations of autistic individuals and their families/carers.
Additionally, Kate Lemon, a speech and language therapist at Oxford NHS Foundation Trust, and her colleagues Katy Willis and Liz Murphy will share their experiences working with families and empowering settings with the support of specialist teachers.
Furthermore, Jane Case, a senior programs manager at GM NHS Bury, alongside her colleague Debi Walker, a Director at First Point Family Support, will discuss the implementation of PACT within their service offering.
We invite you to join our webinar and contribute to the progress of evidence-based autism care pathways, making a meaningful impact on autistic individuals and their families.
9.45 - 10:00 Catherine Aldred – Welcome and the vision for the future
10.00 - 10:40 Jonathan Green – Early support for neurodivergent children and the new autism care pathway
10.40 - 11:20 Kate Lemon, Katy Willis, Liz Murphy - PACT in Speech & Language Therapy Oxford Health NHS Foundation Trust: Working with families and empowering settings with the support of Specialist Teachers.
11.20 -11:50 Jane Case & Debi Walker - PACT implementation in Greater Manchester, Bury NHS
11:50 - 12:00 Q&A - panel
Catherine Aldred, Consultant Speech & Language Therapist + Director of IMPACT
Jonathan Green, Professor of Child Psychiatry, UoM + Director of IMPACT
Kate Lemon, Specialist Speech and Language Therapist, NHS + IMPACT Associate
Jane Case, Senior Programme Manager GM NHS (Bury)
Debi Walker, Director of First Point Family Support
1. Question: How has the voice of autistic people been included in your research?
Answer: Listening to neurodiverse and autistic parents who participated in the research and gave their views and feedback. The views of children participating in the research were heard through observing their spontaneous verbal and non-verbal communication. Several autistic young adults have given their feedback on their personal experience of receiving PACT in the original PACT trial, which is available on the PACT website.
2. Question: Has there been any research within PACT in how we can adapt our therapeutic style/questions/expectations for neurodiverse parents?
Answer: Yes, several neurodiverse/ autistic parents participated in the trial. PACT has a range of therapeutic approaches adapted to the adult learning style. For example, visual methods such as drawing cartoon pictures with thought bubbles can be used to represent video interactions or analogies that the person can relate to.
3. Question: Is it already possible to be trained in iBasis? Where can I find more information about iBASIS training?
Answer: Hi Martina - we can put your name down on the iBasis waiting list and let you know when the next course runs - hopefully early next year. Anyone interested in iBASIS training can send their name and contact details so they can be on a list for the next available courses. Thanks, Elena.
4. Question: Can I find some Information about this training (costs and time) so that I can speak about it with my boss?
Answer: Anyone interested in SACS R and iBASIS training can send their name, profession, location, and contact details, as well as the number of potential trainees there. We’ll be in touch with details shortly. Please email us at: info@pacttraining.co.uk
PACT training costs are available on the website: https://www.pacttraining.co.uk/course-fees/
5. Question: How do you view Marge Blanc's NLA framework and the push to offer intervention focusing on Gestalt Language Processing?
Answer: The Royal College of Speech and Language Therapist research committee are evaluating the evidence for GLP and will report on their findings. If there is sufficient evidence, this will be published on the RCSLT What Works website.
PACT is process-driven, adapting adult language input according to individual variations in child processing capacity and learning processes, and it follows developmental theory. We note the fact that there is little quality evidence at the moment supporting the GLP approach, and despite the current enthusiasm for it in some quarters and on social media, we would want to take a considered look before advocating its use. We are actually considering a conference discussion on this in the medium term, so please register your interest if you’d like to join that.
6. Question: My concern is that this is teaching children to mask. The results sound like they are measured against neurotypical social interactions. The reduction in challenging behaviour in school can only be explained by masking, in my opinion, unless changes have also been made to the school environment to ensure it meets the child’s needs. How are you ensuring this approach is not causing trauma to the child?
Answer: Jonathan Green, thanks for this important question, Eleanor. I understand your concern about masking. We have had much consideration and discussion around this.
The fact that what we show happening (both in our clinical trials and everyday implementation) is an increase in the young child’s spontaneous social initiations and engagement represents, I think, a form of autonomous self-expression—and if you like a kind of moral agency—that feels very different to masking…..
Crucial is that we are not ‘teaching’ anything here, nor is the parent - instead just facilitating an increased awareness and responsiveness of the social environment around the child. And we see the child react spontaneously to this….
I see this as equivalent for the young child of what autistic people advocate for sensitively adapted everyday social environments later on….(Another way of putting it can be that we’re addressing Damian Milton’s ‘double empathy’ issue at an early point in development).
We think that the child’s consequent experience of being attended to and understood and better related to in their intimate environment increases their sense of relatedness and security and decreases their distress and trauma – and that this being more relaxed in themselves accounts for their improved challenging behaviour at home and school.
This, for instance, is what a 21-year-old autistic young man said, having experienced PACT when he was in pre-school:
“I think experiencing shared attention (in early PACT years) gave me that skill of knowing how to share; let's call it a shared experience…I’m that open person who gets on with everyone… It's like, come on, join us. It was an exposure to those sensitive adults; I thought, this person is interested in me, knows what I'm thinking and sees what I see. It was just having fun, it was play, just enjoyment, your style, things you're really interested in and building a relationship. Yeah, the child finds a way, like he's always… once you join it with me, I‘lI join you, and it’s a connection….Even my teachers seemed like friends in that relationship building; you felt like you were connected to someone. Even if it's just like a very small thing.”
7. Question: The SACS-R sounds very helpful, can you advise us practically how NHS services would access this tool, and give us an overview of any staff training or other cost implications of using this tool?
Answer: Jonathan Green. Staff do need training on SACS-R – it is pretty straightforward, and the cost is reasonable It is best to contact me directly at Jonathan.green@manchester.ac.uk or email info@pacttraining.co.uk
8. Question: As a teacher in a maintained nursery in Greater Manchester who is also PACT trained, I would be interested in the SACs training. Is this available to educational professionals?
Answer: Hi Jennifer - thanks for the question. Please email info@pacttraining.co.uk to register your interest, and we will get back to you with further information as soon as possible.
9. Question: Do you offer any AAC support at any point during your pathway?
Answer: Thanks for this question. PACT supports the spontaneous communication mode and method chosen by the autistic child, including all modes of non-verbal and verbal communication, and builds on individual child motivations to communicate. Although PACT does not ‘teach’ AAC, it can work alongside other interventions depending on individual child needs.
10. Question: Do you have a link to the May I join you? training.
Answer: The YouTube video is freely available: https://www.youtube.com/watch?v=_Lz4xoIW5TM
11. Question: There is no need for a diagnosis of autism to access PACT services in Oxfordshire. This probably lengthens the wait list and may mean that children who really have autism may access PACT later than optimum.
Answer: Kate Lemon. There isn't a need for a diagnosis because sometimes children are referred later on, but I am very confident that all of the children we work with would and will meet the criteria for diagnosis if parents are open to assessment.
12. Question: What funding streams did First Point tap into to be able to train, deliver and lead on the PACT delivery?
Answer: NHS England supports the roll-out of the new autism care pathway, but services can make a case to local commissioners and service managers. Some services have started by training two professionals on the same team, gathering testimonies and feedback to make a case to expand and train other professionals.
13. Question: A couple of colleagues of mine have been unable to join today. Will this be recorded so they can access it?
Answer: Jonathan Green. There is a recording which will be posted on the website www.pacttraining.co.uk. Please feel free to share it with colleagues and managers.
14. Question: Jonathan, any views on the reasons behind such an increase in prevalence/demand in Neurodiversity? Thanks
Answer: Long conversation! Essentially, I think greater awareness, a great broadening of identifying criteria used, social media and cultural changes with advocacy and valuing of ND.
15. How easy is it to train a wide range of professionals in delivering these two approaches and adhering to the model?
Answer- iBASIS and PACT are manualised with certified training involving a 2-day live group training course, including small group practice exercises and followed by group and individual practice supervision. Professionals from a wide range of disciplines (speech and language therapists, clinical and educational psychologists, psychiatrists, early years, mainstream and special needs teachers, therapists, family support workers, social workers, specialist nurses, and health visitors) can train in PACT.
16. I'm interested to know how the concept is introduced to parents who may not be aware of/or anticipate possible social communication needs and how they generally responded when SACS-R was introduced.
Answer - Part of the SACS-R training is how to help parents in this context….(it usually doesn’t come up since parents are the first with their concerns…but yes, with some parents, we need sensitive discussions to frame the child’s development for them)
17. In Stockport, were therapy resources shifted from children on existing waiting lists, either for diagnosis or SALT, to deliver iBASIS or PACT to younger children? Or was the model delivered with additional resources?
Answer - there were some initial start-up extra resources, but we worked quickly towards re-purposing current staff activity - this does mean people moving from some existing activity into this pathway - in the end, that I think is an essential part of system change….the SACS-R takes about 5-10 mins additional staff time and has proved feasible to incorporate. However, we incorporate the pathway principles with a service’s existing offer, too – building on their current effective work…this is a matter of local discussion and adaptation.
18. Has SACS-R been used universally in any region of the world? Has it been used within preventative medical check-ups by paediatricians? What are the parents told in case of "failing" the screening, e.g. increased autism risk, social comm. problems, neurodivergence...? What is the acceptance rate of IBASIS by parents? How does the lack of a diagnosis affect parental motivation and engagement? In practice, we see problems in families of children with suspected diagnoses.
Answer- SACS-R has been used in large-scale population studies in Australia, Tasmania, Nepal, and, I think, China and elsewhere…..Universal service embedding? Not sure, but Jose Barbaro would say. The discussion with parents around SACS-R findings is nuanced and adapted to the specific cultural/clinical setting, so difficult to generalise…but essentially about developmental differences and likelihoods….linking this with the care described is on the rationale that this is generic support effective for ND difference as well as formal diagnosis…So, for a number of families, we assume that proceeding to formal MDT diagnosis may not always be considered necessary by the families themselves. In West and South Australia, they are using an existing embedded community identification rather than SASC-R – so this is an alternative…I don’t know at present how well this is working…but I advise the use of SACS because of its evidence base.
19. To Kate - How did you manage to fund the training of SLT and SLTTI staff?
Answer - SLTs were funded by NHS England, and SLTIs were funded by our own SLT budget.
20. To Kate: How much time does the implementation of "May I join You? " for early education professionals take?
Answer - The May I Join You? workshop can be adapted to the time available, but I would ideally recommend 2.5 hours to include all elements well.
21. What is "riding the rapids" ?
Answer- Riding the Rapids is a behaviourally orientated parent group approach to concerning behaviours related to Learning and Developmental Disability.
22. From Jane Case to Everyone: Supporting Your Neurodiverse Child Padlet Neuro Support Padlet ( ADHD ) https://padlet.com/ThriveinBury/sensory-processingdifferences-support-padlet-ahdnfz48trc9gd4l
23. I have heard of 'May I Join You?' ...where do you feel this fits in with the I-Basis and PACT approaches? Can it be a support to those using these approaches?
Answer MIJY helps adults develop awareness of encouraging social engagement and communication in children who are showing difficulties with social communication (ages 1-6 years). Although there is no evidence that developing awareness impacts child outcomes, this may be a useful resource to introduce communication in early years settings or for healthcare workers considering progressing to iBASIS or PACT training.
24. Can PACT be funded by the NHS for parents?
Answer - There are a number of NHS trusts in the UK that offer PACT, and we hope that more and more NHS trusts will begin to train staff to offer PACT to parents.