Caroline Dinenage (Minister for Care) holding 'Understanding Autism' certificate


To mark World Autism Awareness Week, the Minister of State for Care, Caroline Dinenage MP has answered questions you asked on Twitter about what matters to autistic people and their families. 

This follows a visit to our Birch House service on Monday. You can read more about that here. The Minister was the first MP to attend one of our Understanding Autism sessions and she is encouraging all her colleagues in Parliament to attend them. You can help by emailing your MP to ask them to attend

Invite your MP

We will also carry on raising our important campaigns on the Mental Health Act, diagnosis, education and the Autism Act inquiry. 

Here are the questions that the Minister was asked, with her answers…


It is World #AutismAwarenessWeek! Thank you for supporting. Why did you get involved with autism?

Care Minister, Caroline Dinenage: 

It’s a pleasure to support World Autism Awareness Week. I’ve been in post as Minister of State for Care for over a year now. My portfolio covers adult social care, dementia, ageing, learning disabilities and, of course, autism. As Care Minister I’m responsible for improving the support for autistic people and working to ensure that not only our health and care services, but other public services such as education, employment, transport and housing meet their needs. This year is the tenth anniversary of the Autism Act, and I’m excited about a number of things my Department is working on, including the review of our cross-government national autism strategy, our consultation on mandatory autism training for all health and care staff, and the NHS’ historic Long Term Plan which lists autism as one of the main clinical priorities.


You’ve done the Understanding Autism training from @autism! Why did you want to do this and will you be encouraging fellow MPs to do it as well?


On Monday I took part in an excellent Understanding Autism session from Autism Access Specialist, Leo. I heard about what it means to be autistic and what kind of situations autistic people might find challenging. It was an honour to be the first MP to take the training and I will definitely be encouraging my fellow MPs to undertake it too, as improved public awareness and understanding can make a huge difference to people’s lives.


My daughter is almost 21 and has fallen through the gap. She had an EHC Plan but college could not support her mental health to maintain her placement. She has Asperger syndrome and social anxiety but no one working with her in adulthood to help this after age 18. CAMHS disappears and the GP just issues repeat prescriptions. My daughter does not leave the house and is trapped in this cycle. Where is the help after diagnosis into adulthood #Autisticforlife? This story is all too common but is sadly our life.


I’m very sorry to hear that your daughter hasn’t has access to the right support. I know that many families find the transition from children’s to adult’s services difficult. As part of the review of our national autism strategy, which will be extended to cover children as well as adults, we will be looking at improving this transition period so no young people fall through the cracks. If you haven’t already, I would encourage you to feed in your views and experiences here, as they will be really valuable in ensuring we get this right.


Will you commit to reviewing the definition of autism as a 'mental disorder' in the Mental Health Act? My personal view is that this should be changed because, as an autistic person, I don't consider my autism to be a mental disorder or mental health condition. Thank you!


You make a good point George and a recent independent review of the Mental Health Act looked into this but highlighted that there could be significant issues with removing autism or learning disability from the scope of the Act, as we could risk causing harm if people don’t get access to the support they need. We will keep this position under review though and will comment on it as part of our formal response to the review this autumn.


Why are the waiting times for autism diagnosis so long? It’s affecting people’s lives in a negative way.


I agree that autistic people should receive a timely diagnosis and the guidelines are clear that families should start assessment within three months. We are working closely with NHS England to improve the situation and will publish diagnosis waiting times in the autumn to support local areas to improve care. The NHS Long Term Plan also sets out further plans to reduce waiting times for specialist services.


My nephew was diagnosed as autistic in 2016. His parents want to send him to a special school, but it has been rejected. They have been told there is no space in the special school. It has been very disappointing for me and the parents because we were hopeful that he will get to admission in the special school and that will benefit him in his learning. Can you please tell me what is the next step we should take?


If your nephew has an Education, Health and Care (EHC) plan, his parents might be able to ask their local authority to review the plan. If he doesn’t have one his parents can request that their local authority carry out an EHC needs assessment.  Local authorities should agree to the parents’ choice of school, if their child has an EHC plan, unless certain conditions apply. If the local authority has recently made the decision to choose a different school than your nephew’s parents asked for, then they may be able to appeal to the SEND Tribunal. They might find it helpful to speak to their local information, advice and support service (IASS), who should be able to help them with next steps. They can also find details about the Education Rights Service here, which provides impartial and confidential information and support to families on school education rights and entitlements. 


Can politicians and the media stop branding support work as low skilled work and can the Government improve the pay, working conditions and resources for support workers who are supporting and safeguarding the most vulnerable in our society?


Andrew, I couldn't agree more that support work is far from low skilled - it takes a tremendous amount of compassion, dedication, resilience - and skill! The national living wage has increased full-time salaries for care workers by up to £1,300 since 2015, but I appreciate that as a society we don’t value their profession enough. We’re working to improve conditions and are currently running an adult social care recruitment campaign to attract more people into the sector and address some of those pressures. In the long term our forthcoming social care green paper will look at how we can recruit and retain a valued workforce.


My son’s care is not only erratic but also takes a different form to what it would do if I lived closer to London. Recognising that circumstances are individual for each autistic case, there is still seemingly a lack of standardisation across the country in terms of care. It feels like there is a penalty for which post code you live in. Is this going to change quickly?


Variations in care are not acceptable and I want to ensure autistic people, their families and carers receive high quality support and services regardless of where they live. To support local areas to do this, we are publishing improved guidance for health and care commissioners with examples of best practice from around the country. We are also developing clear and consistent standards for education and training on autism for health and care staff, and staff in organisations with public facing responsibilities. Finally, as I mentioned, we are currently consulting on mandatory training on autism for health and care staff to ensure staff across the country have the knowledge and skills to deliver safe, compassionate and informed care.


There’s not much data on specific attitudes towards autistic people in certain positions: I.e. How would you feel if an autistic person was your neighbour, boss etc.? How do we get this kind of information and what kind of action should be taken in response to any findings from it?


Charities including the National Autistic Society have done some research in this space, but I agree this kind of data is so important to help inform policy. As mentioned, last month we launched a national call for evidence to hear the views of autistic people, their families and carers and professionals about where progress has been made and where more needs to be done. This includes specific questions about public and professional awareness and understanding of autism. We will use these findings to inform our refreshed strategy which will be published in the autumn so please have your say here. Alongside this we will be launching a national awareness raising initiative later this year aimed at improving attitudes and understanding.


How do we make sure that autistic people and their families are able to access environments and what kind of messages can the Government send out to help reduce the amount of autistic people who feel socially isolated?


It’s heartbreaking to think of autistic people facing barriers to participating in their local communities, and suffering social isolation and loneliness. Our national awareness raising initiative should help address some of these issues, whilst at the same time work is underway across government from education to employment, transport and housing to adjust public services to make them more accessible to autistic people.


Autistic children become autistic adults. There needs to be more support, understanding and awareness for autistic adults. Are there plans for any upcoming support services for older autistic people like me? Believe me, there is a need for this.


Our national autism strategy will help to improve support and I want it to work for people of all ages, from children to adults. We’re asking for views from autistic people about where they feel progress has been made and importantly where more needs to be done. I would encourage you to take part in the survey and let us know what you think is needed. We will use the findings to inform our new strategy, published in the autumn.