Find out below the plans for rolling out the coronavirus vaccines to autistic people in the UK and what we’re pushing for at the National Autistic Society. 

Autistic people have already been extremely hard hit by the coronavirus pandemic – with many feeling Left Stranded. The newly approved vaccines are giving many people hope – and like everyone else, autistic people and their families want to know when they can get vaccinated and how their needs are being prioritised. 

The Government’s plans so far

The NHS needs to vaccinate as many people as possible, as quickly as possible, to save lives and to allow us all to get back to our usual routines. This will take time because each vaccine needs to be given in-person and drug companies need to make enough of the vaccine to go round. The vaccine is also given in two doses, up to three months apart. So each of the UK’s governments need to decide who to vaccinate first, so that it stops the most vulnerable people getting ill.

Below we set out the order in which governments in the UK are planning to vaccinate people. Some autistic people might fall in these groups, but there isn’t a single group for all autistic people:

People over 70 or ‘clinically extremely vulnerable’

As far as we know, most people who got really ill and died from coronavirus were older, so the NHS is starting by vaccinating people over 70 years old, starting with the oldest people first. There are other people, younger than 70, who are also at risk of becoming very ill if they get coronavirus. This group of people is called the ‘clinically extremely vulnerable’ group. It means people who have a disability or condition that we know means it’s even more dangerous if they get ill because their body might not be able to fight the virus (like Down’s syndrome or someone having cancer treatment). Put together, these two groups add up to about 15 million people. Governments hope to have given all of them the first dose of the vaccine by the middle of February. 

There isn’t any information on whether autistic people are more or less likely to be infected with coronavirus or develop serious complications. Not knowing this is a serious problem that we have been raising with all governments in the UK throughout the pandemic. 

People over 50 or with an ‘underlying health condition’

After those groups, the NHS will keep going down through age groups to 50. It will also give people from the first group the second dose of the vaccine. This will be from mid-February. It will also ask people with ‘underlying health conditions’, as well as unpaid carers to come for a vaccination. Governments still need to decide exactly which people are included in the group with ‘underlying health conditions’. This is sometimes called ‘priority group 6’. At the moment, it includes people with a ‘severe’ or ‘profound’ learning disability, who research suggests could be at greater risk of becoming very ill if they get coronavirus. About 1/3 of autistic people have a learning disability - we don’t know how many autistic people have a ’profound’ or ‘severe’ learning disability and there isn’t agreement about what these terms mean. 

People with a learning disability should have their diagnosis recorded on their GP record and this is what the NHS will use to decide when to invite people for a vaccine. But these records won’t usually say if someone’s learning disability is classed as ‘severe’ or ‘profound’, which means some people could be missed. This would be unacceptable, which is why governments should prioritise all people with a learning disability, including autistic people who also have a learning disability. We will keep pushing for each government to change this. In the meantime, if you have a learning disability or you have a family member who does, you should contact your GP to make sure this information is included in your or their GP record. 

Other age groups

The rest of the population, including the autistic people and their families not already covered by the above groups, will be vaccinated when the vaccination programme reaches their age group. 

Prioritising autistic people with high support needs

At the National Autistic Society, we are worried that the ‘underlying health condition’ group could miss out some vulnerable people. Many autistic people have very high support needs and rely on care and support 24 hours a day to stay safe. This could be someone who lives in a residential care home, in supported living, or lives with their family with carers visiting them. If they get coronavirus, they might not be able to get all the care and support they need, which could in the worst cases mean someone struggles to eat, wash and stay safe. This group of people should also be included in the ‘underlying health condition’ priority group. We have been telling governments this for months and we keep doing so until they change their plans. 

Unpaid carers

At the end of last year, alongside other organisations, we called for unpaid carers to be vaccinated because if they get ill they won’t be able to care for their autistic relative. Governments in England, Wales and Northern Ireland have so far agreed with this and all unpaid carers will get vaccinations at the same time as people with ‘underlying health conditions’ in group 6. We are waiting for confirmation in Scotland. If you are an unpaid or family carer, you should contact your GP to make sure it is written in your GP records. 

What about other autistic people?

If you are autistic and have a severe or profound learning disability, you will be in priority group 6. If this is you, you should contact your GP to make sure it is written in your GP record.  If you have another condition that makes you ’clinically extremely vulnerable‘, another ‘underlying health condition’, or are an unpaid or family carer you will also be invited for your vaccination soon. If these categories don’t apply to you, you will be invited for a vaccine when the NHS reaches your age group.

Some people have asked if all UK governments could prioritise all autistic people, because of the impact coronavirus is having on their lives. While we want to see all autistic people vaccinated as quickly as possible, we don’t believe it is possible to create a new priority for autistic people who do not have high support needs. This is because:

• We know there is a health inequality for autistic people, but there is not evidence that autistic people are at risk of becoming more ill from coronavirus than others, unless you have a certain other ‘underlying health conditions’, in which case you will already be prioritised. This is important because this is how the governments are choosing the order to vaccinate people in.
• We have been campaigning for many years for GP records to say if someone is autistic, to tackle general health inequality for autistic people. Some records do, but it is very inconsistent. This is especially true for autistic adults. This matters because these records are how the NHS decides who to invite for a vaccine. Currently the NHS wouldn’t know well enough who is autistic and should be invited for a vaccine. This is one of the reasons why we have been campaigning on GP records for so long, and we will keep doing this. 
• Getting the vaccine does not mean that you don’t have to follow coronavirus restrictions anymore. This is really important because many autistic people find the disruption to their daily lives, frequent rule changes, and staying at home the hardest thing about the pandemic. Even once you have both doses of the vaccine you still have to follow these rules. This is because governments don’t yet know whether the vaccine stops you from passing on the virus, even if you don’t get ill from it. So you might still spread the virus once vaccinated, which would put other people at risk. There is a lot of research going on into this issue. At the moment, it looks like some level of restrictions will be in place for a long-time, until each government decides enough of the whole population are vaccinated. 

Further information and advice

• To stop coronavirus affecting all our lives, it’s really important that as many people as possible are vaccinated as soon as possible. If you have more questions about the vaccine or coronavirus restrictions, check out our Coronavirus Hub and our information on the vaccines. 
• We know the last year has been extremely challenging for many autistic people and their families. If you are struggling to cope with the impact of lockdown, please look into using our help and advice services.  
• Many of our volunteer-run branches are running online support groups during the pandemic. Contact your local branch to find out what is available where you live.