Edit dated 8th December 2023: 

Our campaign against NAS (National Autistic Society)’s new webpage about​ PDA amassed over 5,800 signatures in just over one month!

This is brilliant, and we thank everyone who has signed or shared.

But more signatures are needed to reach our next target of 7,500 signatures, because NAS still haven’t listened to us, or responded, and their PDA webpage is still causing harm.

Since we started this petition NAS has quietly changed their PDA webpage, but have done so without responding to us about the changes or consulting the PDA community about phrasing.

Their updated page is only a slight improvement on the previous one. They removed only a few inflammatory statements and have provided a link to a letter for parents to send to schools who've withdrawn support for PDA, but NAS's information about PDA is still misleading and invalidating. It favours the views of PDA sceptics and forces parents to use NAS's template letter to correct the negative assumptions about PDA that their biased webpage is directly creating. 

NAS has no right to favour PDA sceptics and ignore the voices of people who experience PDA first hand. Their mission statement states, explicitly, that their purpose is to “change attitudes by improving public understanding of autism... deliver better services and improve laws... LEARN FROM REAL EXPERIENCES” (emphasis ours) 

They also claim that by learning from real experiences, they look ahead so they stay open to learning more. (https://www.autism.org.uk/what-we-do/who-we-are/our-mission-vision-and-values

Why then have they become deaf to the real experiences of the PDA community?

Why have they opted to prioritise the views of PDA sceptics above the views of people who identify as PDA?

Why are they actively ignoring the combined voices of the PDA community?

It should be borne in mind that NAS is not a diagnostic body. They are, therefore, not qualified to curate PDA.

They are a charity failing to honour their core remit: to prioritise the lived experiences of autistic people.

NAS have stated, in their correspondence with us, that they aren't aware of any cases of their updated PDA page having been used, by professionals, as an excuse to withdraw support from PDA children, even though we alerted them that families had told us this was the case. 

With NAS's sceptical position in mind, if anyone does write to them about negative experiences, will you please also forward us a copy so that we can a keep record? We won’t publicise any details unless given specific permission. 

We thank you all for your ongoing support!

Original petition text: This petition has been created jointly by No Pressure PDA and Sally Cat in response to National Autistic Society (NAS)’s autumn 2023 webpage about Pathological Demand Avoidance (PDA) which contains inaccurate, biased information that's harmful to our already vulnerable community. PDA is a little-known, life-long condition that causes high anxiety and a high likelihood of missing out on education and employment. The webpage is presented as a complete guide to PDA, but the defining features of the profile are scattered, making it an unhelpful resource for anyone trying to understand what PDA is and/or how to support it. There’s no clarification that PDA refers to a profile, or cluster of traits, as well as our unique type of “pathological” demand avoidance (that gives its name to the profile) which implies that PDA is nothing more than autism plus extreme demand avoidance so, therefore, curable.

NAS's new webpage about PDA is already being used by service-providers (such as schools and social services) who were already been discriminating against PDA people, parents, carers and professionals seeking to support them, as an excuse to discriminate further. It makes it less likely for specific PDA support needs to be met, meaning more children will fail in school and suffer mental health crises. It will mean more young adults will be locked in secure units in place of being supported to flourish. It makes it even harder for the large number of PDA adults who’ve slipped through the net (for example, by being misdiagnosed with personality disorders) to gain appropriate support. It fuels the trend for social services interpreting PDA as “fabricated or induced illness” (FII) and harassing parents and carers, in place of supporting them. 

It's vital to act now to pressure National Autistic Society to remove their damaging and prejudiced page about PDA before any more damage is done to our already fragile community. Although NAS is a UK charity, their website informs a worldwide audience. Every day, PDA children are deprived of education because schools fail to provide appropriate support. Every day, PDA young adults lose heart at pursuing qualifications or careers because their PDA traits and needs are misunderstood. Every day, PDA adults are unable to access vital support (such as healthcare) because the accommodations they need aren't met. Every day, teachers, career advisors, doctors and professionals look to NAS's website for clarification about what PDA is and whether it merits support. NAS's new webpage about PDA will inform them not to support PDA; and even to withdraw support previously put in place. Every day that NAS's new webpage about PDA remains published, countless harm will be inflicted on our vulnerable community. The slow journey to our condition being recognised will be set back by years. 

Background. In March 2023, when NAS invited members of the PDA community to contribute to the formation of this page, they were informed its aim was to provide “a balanced interpretation of the evidence” for PDA, “reflecting current research, professional practice, and lived experience.” 

However, contributors from the PDA community weren’t invited to review the page before its publication, and the published document is neither balanced nor reflective of lived experience.

PDA is discussed as “demand avoidance” only, which confuses the difference between PDA-specific “pathological” avoidance and other forms of demand avoidance.

It's implied that NAS doesn't accept PDA: "The National Autistic Society has historically engaged with the concept of PDA through website content, training, conference events and other activities. This has created an assumption that the National Autistic Society accepts the concept of PDA and its relationship to autism, which has been referenced in the debate about PDA."

The section discussing “controversy” presents the views of PDA critics as established viewpoints, and minimises rebuttal from the PDA community as a brief afterword.

Research that’s been carried into PDA is labelled “poor quality”, or painted as having an agenda, without citing specific examples. Despite including research deemed “poor quality”, NAS have omitted the results of a large, statistically-analysed, peer study that supports the existence of by PDA by evidencing 105 unique PDA traits not shared with the general autism population.

NAS have included quotes from the PDA community, giving the false impression that they support what's been said, but NAS didn't tell them how their words would be used.

NAS have not responded to any concerns raised by the PDA community.

If you wish to see NAS follow through on their previous commitment to putting PDA voices first, please let them know by signing our petition to help us be heard!