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How will I feel after receiving an autism diagnosis

Receiving an autism diagnosis can be an intense emotional experience and people report a wide range of reactions, which often change over time. Learning about autism, about your strengths and needs, and accessing emotional support (alongside relevant professional support) can help you navigate this time.

Common reactions to receiving an autism diagnosis

Many autistic people describe getting their diagnosis as a significant life event, with some describing it as life-changing, mind-blowing and liberating. However, initial reactions can be both positive and negative, with some people feeling very different emotions to others, or conflicting emotions at the same time. 

There is no single ‘correct’ way to feel after getting your diagnosis, and it is okay if your reaction is different to others, including people you know and people whose content you see online. Everyone is different and a person’s reaction can depend on their specific circumstances, for example: 

  • how much they know about autism 
  • whether their knowledge is up-to-date or based on outdated stereotypes 
  • how early or late their diagnosis came 
  • how much they already understand about their own strengths and challenges 
  • whether they are already accessing support for their needs (for example, at school, at work and in healthcare, including mental health care).

People may feel conflicting emotions at the same time. A person (or their parent/carer) may feel relief that they have an answer, but also worry about how challenging it may be to access the support they need. They may feel hope that now they can understand themselves better, but fear about the stigma and lack of understanding that unfortunately too many autistic people encounter in society, and sometimes even among friends and family. They may feel validated after a long journey to have their autism recognised, and anger that this did not come sooner. Below are some real-life examples from autistic people. 

Parents and carers should be aware that children receiving a diagnosis may become confused and concerned that there is a problem with their health or that there is something wrong with them.  It is important to explain that autism is not an illness and that a diagnosis doesn’t mean something is wrong with them. Additional advice can be found on our page Talking about and disclosing your autism diagnosis.​​​

Autistic people’s reactions to diagnosis, in their own words

 

Children and young people

"At first, I was upset about my diagnosis, but it helped me see why I had been struggling so much in school and with my identity. I did find it difficult to share my feelings with people unless I trusted them. I was able to talk to teaching assistants and the Special Educational Needs Coordinator (SENCO) because they were friendly." 

– Geoffrey, Twists, reliefs, and rewards: understanding your autism diagnosis

"Sadie has learned a lot about autism because of her two sisters, and when she learned about it, she would say, 'That's me, mum!' ... When I got the results, I was … so relieved because I knew how important it was to her and how much she'd wanted it. ... How are you feeling, kid? You finally know! [Sadie, 11: 'It's really great!']"

– Autmazing, Is our 11 year old autistic? Diagnosis day 

"I hear stories from other people who have been diagnosed later on, they often talk about this weight off their shoulders or this moment of realisation or relief. Whereas [at 16] I didn't feel that at all. ... I hated my diagnosis.  ... the only experience I'd ever had of autism were the savant male characters on TV. And I felt like: I'm autistic, but I don't have the superpower part. And that made me angry. ... Now I feel a sense of pride in myself because I've done a lot of things that I was never considered able to do."

– Alex’s story, NAS Now I Know campaign

Super Girl [16, diagnosed age 7]: "I feel like [being autistic] doesn't need to be a really important part of your identity, and it shouldn't feel like it has to be.' Purple Ella (Super Girl’s parent): 'I think that's true. For those of us diagnosed late it can inevitably be a big part of our identity and what we think about a lot because we have to process a lifetime in which we were just like 'What's wrong with me?' Whereas, perhaps, if you've grown up [not thinking that], maybe it isn't such a big deal."

 – Super Girl and Purple Ella, Getting an autism diagnosis as a child

Late-diagnosed adults

"I wasn’t prepared for the imposter syndrome that set in after my autism diagnosis. Why? Possibly because, after my diagnosis, I scoured the internet for autism material, found too many opinions that my version of autism wasn’t 'real autism', and heard more often than not that if I was late-diagnosed, that meant I was at the very edge of the diagnosis, just a mild case with no 'real' challenges."

– Alex Michael, Imposter syndrome and my late autism spectrum diagnosis

"How does receiving that diagnosis later in life impact you as a person? ... It can have a significant and profound impact on your mental health. You might think, ‘Yeah, for all the positives’, right? Now you know you're different; you're not broken; you know who you are now. But let's talk about the other ones that absolutely happen. Feelings of confusion, frustration, anger. ... In a way it can lead to a sense of loss, and ... it's not the loss of being neurotypical. It's the loss of: ... I've been denied the opportunity, up until now, to live my best life as my unique autistic self." 

– Orion Kelly, Impact of Late Autism Diagnosis on Your Mental Health

"I hear a lot of people saying that they were relieved to know. For me, I was angry. Angry I missed it, angry how my family treated me before and after I was diagnosed, and angry how things were so difficult academically, mentally, socially. ... Maybe I just needed time to work through this. ... I just know that I’m not as angry as I used to be."

– Emmanuel, My Late Autism Diagnosis: I Was Angry

"It was as though I had put on glasses for the first time after twenty-eight years of unclear vision. ... [My] diagnosis has been the single most pivotal and freeing experience of my life, and I am completely content in my brand of normal."

– Brittney Neal, What autism means to me

Understanding your characteristics, strengths and needs

Receiving a diagnosis can sometimes seem like arriving at the end of a long journey, especially if you have waited a long time for your assessment and/or have felt that this confirmation was a long time coming. 

However, it can also be the start of a new journey to understand your (or your child’s) autistic characteristics and unique profile of strengths and challenges. This can be particularly true for people who receive a diagnosis later in life and whose needs may not have been recognised or supported previously. 

Understanding these characteristics, strengths and challenges can help you think about strategies that could improve your (or your child’s) experiences and outcomes in life, for example at home, school and work. The team that carried out your assessment may have provided you with support, advice or strategies that may be helpful. 

Examples of these strategies include: 

  • cancelling, leaving early or taking a break from social events when needed 
  • setting personal boundaries (for example: saying ‘No’ if you are not comfortable with something; stating the time you need to leave an event; or letting people know that you may not reply to their message or social media post straight away) 
  • allowing yourself to stim (such as hand flapping) and be echolalic (repetition of words or sounds) as much as feels natural to you 
  • censoring yourself less (for example by sharing your opinion even when you think others may not agree) 
  • working to improve your sleep (by creating a bedtime routine, for example, with calming activities, reduced screen time and lower light and noise levels) 
  • working to create a home that feels safe and meets your sensory needs 
  • learning to recognise your own signs of distress so you can practice self-care (for example, resting or asking for help) to prevent or lessen overload or shutdown 
  • scheduling downtime or rest in between activities 
  • allow yourself to enjoy interests or hobbies, regardless of social ‘norms’ 
  • making a conscious effort to be more kind to yourself (for example by challenging negative thoughts about yourself and accepting that everyone makes mistakes, so not judging yours too harshly) 
  • re-evaluating your expectations of yourself (for example if you are pushing yourself too hard) 
  • ‘unmasking’ and working to understand yourself ‘underneath the mask’ (read more about this on our page about masking). 

Reflecting on your experiences and identity after a late diagnosis

Many autistic people consider autism to be a key part of their identity. It is common for people who didn’t know they were autistic for much of their life to reflect on their identity and their past experiences in light of this new information about themselves. This can be an intense emotional experience and is unique to each person. 

It is common for late-diagnosed people to realise they have been ‘masking’ their autistic traits, consciously or subconsciously, throughout their lives. Some people attempt to ‘unmask’ to discover their natural autistic characteristics, including their: 

  • communication needs (such as preferring direct language, or emails instead of phone calls) 
  • sensory preferences (such as lower light and noise levels) 
  • coping mechanisms (such as self-regulating behaviour known as ‘stimming’) 
  • hobbies and interests that they may previously not have allowed themselves to pursue (because they might be seen as unusual, for example). 

Autistic people have said this time of reflection following their diagnosis can lead to: 

  • self-acceptance, as their diagnosis helped to explain differences from non-autistic people that they previously struggled to understand 
  • self-compassion for the challenges they have faced and how they coped with them 
  • self-forgiveness for judging themselves too harshly in the past and holding themselves to non-autistic standards and norms 
  • replacing unhelpful (often negative) judgements of themselves and their abilities with more accurate descriptions that better explain their experience 
  • giving themselves permission to admit when they are finding something difficult and to ask for support 
  • a greater ability to communicate their needs and identify appropriate adjustments and support. 

Lived experience sources suggest that it is common for some autistic people to experience negative feelings, poor mental health or confusing feelings, such as a loss of sense of self, after receiving their diagnosis, and that it took time and a period of reflection before they experienced the more positive feelings and outcomes listed above. Many have highlighted how helpful accessing information by other autistic people and peer support (via online forums, for example) was to them. 
 

What emotional support is available after diagnosis?

Formal support is available to autistic people based on an assessment of their needs in areas such as social care, welfare benefits, education and employment. Visit our page on Formal support following a diagnosis for information about this type of support. 

It can also be helpful to access emotional and peer support, such as joining a local or online support group or social group, accessing relevant information and training, and calling a helpline or other support service (for example a mental health helpline like Mind or Samaritans, or a local autism helpline in your area). Meeting like-minded people and sharing relatable experiences can be helpful, and attending social and support groups can lead to positive outcomes including the development of: 

  • a greater understanding of autism 

  • a deeper understanding of and compassion for yourself 

  • strategies to manage everyday challenges 

  • a positive perception of autism as a difference not a deficit 

  • opportunities to meet and interact with other autistic people. 

The availability of local support groups and social groups will vary depending on your location, but you can also access online forums and community spaces, including those hosted and moderated by charities, for example: 

You can learn more about autism from a variety of media and events, including: 

  • blogs, video channels and books created by autistic people about their lived experience 

  • documentaries and articles about autism 

  • information from autism charities 

  • autism conferences 

  • online forums. 

Be aware that not all information and media about autism is reliable and evidence based. You should be particularly wary of any source that talks about how to ‘cure’ or ‘treat’ autism, which is not possible and so the source is likely to be unreliable. Read more about this issue on our Strategies and interventions page. 

The National Autistic Society has a network of volunteer-led branches that provide support, information and social activities for autistic adults and children and their families in their local area. Search for your nearest Branch here. You can also find support services and social groups in your local area using our Autism Services Directory. 

Insight from autistic people
 

"My advice is to ... meet a wide range of autistic people as it can start to really help you understand yourself. Being in an autism-friendly environment really allows you to be yourself and value your different interests. It is an opportunity to access support from people who really understand autism and find a safe space where you feel comfortable sharing how you feel with someone you trust."

– Geoffrey, Twists, reliefs, and rewards: understanding your autism diagnosis

"The five months since I was ‘officially’ diagnosed with autism have been a whirlwind of discovery, namely finding other autistic women like me, and finding out so much more about myself – the small parts of my internal life that, until I could identify them, went unnoticed or pushed aside."

– Yo Samdy Sam, Life after autism diagnosis – what next?

"Your needs are forever changing and will change depending on your circumstances and what environment you are in. For example, if you are studying at college your needs will be different from when you’re in an interview situation. Don’t feel pressured to know what your needs are straight away and what support might help you. You’re always learning and developing skills about your diagnosis and what will help you to achieve your goals."

– Georgia, My advice on explaining your autistic needs

"I realised that my diagnosis gave me the courage to be open about the things that I struggled with and helped to inform discussions about the changes that I needed in order to become the person I was meant to be."

– Helen Needham, How my autism diagnosis helped me to open up 

"The years following my diagnosis were part of the process of self-discovery; of becoming a better version of myself. It has also been a time of self-forgiveness, and of self-acceptance. Now I largely understand why life hasn't always gone to plan, but gradually, I am making peace with my pre-diagnosed past, and my post-diagnosed present."

– Steve Slavin, Why I no longer tell people I'm autistic

"There are so many support groups available in so many places, either ‘in person’ or online. It has been a huge relief to understand that I am not alone but that there are many others who understand, and who have lived experience and insights and suggestions that can help me in many ways."

– Debra Brisch, After adult diagnosis

"Some things that could happen if you are diagnosed late, as an adult: one, you're going to be reframing your whole life with this new knowledge. You're going to be looking back on things that happened in your past and seeing the autism ... and looking at it all with completely new eyes. Two: you're going to be figuring out who you actually are underneath the mask. You're going to have realised that you're doing this thing called masking where you pretend to be neurotypical in order to fit in, and you're going to start to wonder 'Who am I underneath that?' And that is going to be a bit of a mission."

– Purple Ella, Four things after a late autism diagnosis

"One thing that [an] autism [diagnosis] does is it gives a new and more helpful label that I can start to use. And you might be wondering why a label would be helpful at all? Essentially, the reason is because if we don't have a conscious label then we pick up unconscious ones. So now, that new label of autistic can help to dispel some of the older labels like lazy or awkward or weird ... Now I can more clearly say, ‘No, I wasn't lazy. I'm autistic, and I was doing my best."

– Paul Micallef, Late Autism Diagnosis: Re-Evaluating Your Life and Re-Discovering Yourself!

Links, resources and article sources

Related advice and support

Formal support following a diagnosis

Read more

Talking about and disclosing your autism diagnosis

Read more

Masking

Read more

Related videos
 

Dr Sarah Lister Brook. Clinical Director, National Autistic Society

Expert Q&A with Dr Sarah Lister Brook

Our Clinical Director answers common questions about autism assessment and diagnosis in this YouTube playlist.

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My diagnosis story: Finty

Our Young Ambassador shares her experience of autism assessment and diagnosis.

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