In this EUCAP Member interview, Jo Minchin, Director of the National Autistic Taskforce, shares the group’s accomplishments and challenges in raising the volume of autistic voices in the UK.
Interview by Els Van Beneden
Edited by Maya Parson
Can you briefly introduce the National Autistic Taskforce?
The National Autistic Taskforce (NAT) was established in 2018 as one of the outcomes of the National Autism Project, with the goal of giving autistic adults a stronger voice in society, with particular attention to autistic people with higher support needs, including non-verbal autistic people.
The NAT is not an organisation like most others affiliated with EUCAP—it is not an organisation with members, and it is kept deliberately small to accommodate the access needs of my fellow directors. Besides me, these are Kabie Brook, Dr. Damian Milton, and Dr. Yo Dunn. The NAT was founded by the late Dinah Murray, who passed away in 2021. Dinah received a substantial sum of money from Dame Stephanie Shirley, which enabled the NAT to get started.
What exactly was the National Autism Project?
It was a very broad project that culminated in a recommendations report: The Autism Dividend.
In short, it showed that when autistic people are not integrated into society, this costs society a lot. In other words, inclusion is cheaper for society than segregation.
The project also advocated for increased investment in research and policies to enhance the quality of life for autistic people. Because autistic people made a very valuable contribution to this project, Dinah received the funding to sustain similar collaborations with autistic people in the future.
“I would like to see more space within EUCAP for the more ‘invisible’ autistic people over time; people living in institutions, people who do not use mouth words, or those isolated at home.”
– Jo Minchin, Director National Autistic Taskforce
Are you achieving this goal?
Yes, definitely. We are consulted very regularly and have our own publications, sometimes in collaboration with other organizations or universities.
You mentioned that you received a considerable startup fund in 2018, but how is NAT currently financed?
The startup budget we received was large but of course not infinite. We are currently searching for a way to continue the NAT sustainably. Besides the startup fund, we also rely on donations. Donations for the organization or donations for our Founders Award, an award we have set up this year to honour our founder. Additionally, we receive income from publications (although several publications are free of charge) and from projects in which we participate.
Can you give an example of such a project?
Yes, for instance, the EQUALS project (Ethical Quality Autistic-Led Support) is currently ongoing. This project stems from our organisation’s An independent guide to quality care for autistic people. The EQUALS project aims to build upon this and to try to implement these principles of quality care within supported living and residential care settings. Think of managing stress, providing individually appropriate care, and so forth. We work on the EQUALS project together with the universities of Manchester and Edinburgh. It runs until 2027.
Do you have other collaborations?
Yes, we do. We work with the National Institute for Health Research on a project to make doctors’ practices more accessible. We collaborated with Skills for Care on a human rights-based approach to care and support for people at risk of distressed or challenging behaviour. We have also worked with Inclusion London, the British Institute of Human Rights, the UN Human Rights Institute, and others.
What is the current situation for autistic people in England?
Theoretically, based on the Mental Health Act, people with learning disabilities and autism could still be subjected to compulsory institutionalization. Now, Care and Treatment Reviews are done on an individual basis, by a multidisciplinary team that reviews each case and determines as a team what is best for that person. However, these CTRs have no statutory footing and are therefore not enforceable. That is already a significant improvement, of course, but even today we still see people without self-determination, people sometimes forced into measures or denied appropriate care.
We also see that the proper knowledge about autism is often lacking among care providers. This has not improved in recent years due to healthcare budget cuts, prompting a return to care for larger, more homogeneous groups, which is a step back for autistic people who need much more individualised support and smaller or non-communal settings.
At the same time, we observe further deterioration in recent years. Employment rates are falling in our country, and this definitely affects autistic people. Government budgets are shrinking, too. For example, the criteria for qualifying for a PIP (Personal Independence Payment) have become stricter, meaning fewer people qualify. Autistic people suffer particularly because hidden disabilities are often misunderstood or overlooked when assigning eligibility scoring.
And how is the situation in British education?
The trend is quite similar. In mainstream education, children with support needs have the right to an EHCP, an Education and Health Care Plan. This is a legal document, individual for each child, stating what support the child should receive. However, it is becoming increasingly difficult for parents to obtain such a document, and when obtained, it is often very poorly written. Additionally, a review of these provisions similar to the PIP is upcoming, and we foresee it will become even harder to get necessary support in schools, especially as school budgets are also being cut.
How do you see the future?
Regarding schools? It’s going to become more difficult from every angle. Also note that specialist schools are being phased out in England, but at the same time we fail to integrate specialized support into mainstream schools. It doesn’t look good for education for autistic children.
One glimmer of hope for new measures specifically for autistic people is that the UK Autism Act will be reviewed again next year, which happens every five years. During such a review, a strategy guidance is drafted. The previous review’s guidance was not published; we hope the next one will be, and that its elements will be incorporated into policy.
But overall, I see, just as it is everywhere in Europe, more decline than progress.
Regarding Europe, what is your relationship with EUCAP like?
I am the person delegated to the EUCAP Executive Board for the NAT. Since we are not a membership organization ourselves, I have only an advisory role in the EUCAP Executive Board. But I do this gladly. We have already contributed to several EUCAP projects. We find this European collaborative network very valuable.
What role would you like to see EUCAP take on in the future?
First and foremost, I think that EUCAP, as a newly formed umbrella organization, needs to take the time to find its place in the European landscape and establish itself firmly. There is still a lot of fine-tuning needed. And that is important.
Besides that, I would like to see more space within EUCAP for the more ‘invisible’ autistic people over time; people living in institutions, people who do not use mouth words, or those isolated at home. Currently, EUCAP is a group of English-speaking, computer-literate individuals who can participate in this international setting. It may be difficult for some of us, but it is impossible for the majority of autistic people, particularly those who struggle with speech. Our experience is not the only reality for people in Europe. Sooner or later, we will have to find ways to incorporate the invisible or overlooked autistic people as well. It would be nice if a working group on this topic could start within EUCAP in the foreseeable future.
Thirdly, it would also be good to compare legislation regarding people with high support needs across different European countries to see what differences exist and what we could learn from each other.
And, finally, what I find very important: to look at which countries are at risk of regressing regarding rights for people with disabilities and neurodivergent people in particular. I suspect the UK is not the only country where budgets are cut and decisions made that do not benefit autistic people. It is important that we form a united front against this trend happening across Europe.
Finally, is there anything else you want to say?
Yes, simply that what we need is for all of us to understand and accommodate each other. That is what’s missing in our current individualistic society. That would already take us a long way. Let’s work on that together in Europe!
NAT At a glance
Name: National Autistic Taskforce
Country: UK
Year established: 2018
Staff: Board of Directors
Target group: Government and local communities
Core values: Inclusion of autistic voices in society
Communication: Publications, website
Funding: Start-up fund, donations, publications, projects
Previous EUCAP Member Interviews
Kosjenka Petek & Zrinka Sinkovic — ASK Croatia
Maria Ivănescu — suntAutist Romania
Viera Hincová – A-Centrum Slovakia
Kabie Brook – ARGH Scotland
Carmen Molina – CEPAMA Spain
Thibault Corneloup & Hélène Queyras — CLE France
