As laws and guidance have changed because of the coronavirus pandemic, you’ve written in to tell us about how this is affecting you and your family. We’ve used your experiences to tell Government what they need to do to support autistic people at this time. We’ll be updating this page as we continue to raise issues. Here’s how we responded to your concerns:

  • You told us: I need to go for a walk more than once a day to manage my anxiety.
    We pressured governments throughout the UK change their guidance about exercise so that autistic people can get outside more than once a day.
  • You told us: I’m worried my child won’t receive equal treatment if they are admitted into hospital with Covid-19.
    We told the body in charge of health and care guidance, NICE, to amend their guidelines for assessing people with coronavirus who go to hospital, so that they better reflect the needs of autistic people.
  • You told us: I’m worried that ‘Do not resuscitate’ is being used without the full understanding or consent of the autistic person.
    We asked NICE to clarify their original guidance on ‘do no resuscitate’ situations. Since then the Government and NHS England have been clear that this should not be applied to conditions such as autism in a blanket way, but should instead be considered on a case-by-case basis. Similar actions have been taken in Northern Ireland, Wales and Scotland to safeguard autistic people and the guidance is now consistent across the UK.
  • You told us: I’m worried about how the pandemic will impact the care of my autistic relative.
    In England, the Government has said that councils do not have to carry out their usual care duties if they are unable to do so because of the pandemic - this is called ‘care easements’.
    We’ve been very concerned by this and pushed for a number of changes to reduce the impact on autistic people and their families. We also urged the Government to publish a list of the councils who plan to ‘ease’ their care duties, which you can find here. We also made sure that autism featured in the Government’s new social care action plan, as well as a promise to train new care workers recruited to replace ill or isolating staff about autism.

    In Scotland, the law to protect adults with incapacity was amended so that councils no longer have to consider the ‘past and present wishes’ of the person or their family. This specifically relates to social care placements, including the transition from residential to community care services. It also means they can overrule the views of a legal guardian. We persuaded the Minister that these should only be used as a ‘last resort’; the Mental Welfare Commission will now oversee these and the above changes to mental health laws should they be introduced. We also campaigned to make sure that coronavirus tests are available to staff in residents in all care homes, and we continue to push for them to be available to autistic people in supported living.
  • You told us: My child would need my support if they had to go into hospital, but I’m concerned I wouldn’t be allowed to accompany them.
    We raised these concerns with NHS England and they clarified that an autistic person was allowed to be accompanied. We also raised this with the Welsh Government and they issued new guidance so that autistic people can receive visitors in hospital during this time. 

Share your experience: tell us how the new lockdown measures are impacting you and your family by emailing campaign@nas.org.uk

In addition, we are also raising a number of other concerns, which are outstanding:

  • In Scotland we have raised directly with the Minister for Mental Health our concerns about reports of local authorities withdrawing what they deemed non-critical care packages. The Minister said that if we brought forward any cases the Scottish Government would look into them and bring them up directly with local authorities. 
  • Concerns around the direct payments guidance, and the unfair responsibility this places on people who need care to procure their own PPE
  • Concerns raised through our services and schools about specific and unique issues we’re facing/have not been addressed by the Government (with DfE and DHSC)
  • The Coronavirus Act Mental Health Act easements guidance – we are still contributing to the development of this, and associated, guidance. Concerns with DEFRA about food insecurity amongst our community, and working with the Government and supermarkets to create more flexibility for autistic people and their families