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Emotional support for family members after a diagnosis

An autism diagnosis can be an intense experience for the person receiving it and for their parents, partner, siblings and other family members or carers supporting them. People report a wide range of emotions, which often change over time. Learning about autism and accessing peer and emotional support can help you navigate this time.

Common reactions to a family member’s diagnosis

An autism diagnosis can be an intense emotional experience, both for the person receiving it and for parents, partners, siblings and other family members or carers supporting them. (You can read more about the experiences of autistic people on our page, How will I feel after receiving an autism diagnosis.) 

Family members can experience a wide variety of emotions and reactions, which can range from happiness and relief to confusion, disbelief, worry and fear. It is common to feel conflicting emotions, such as happiness at having an answer and worry about the stigma autistic people can face in society. 

Many parents report positive reactions such as happiness and relief following their child’s diagnosis.  Often parents wait many years for an assessment, which means receiving a diagnosis can bring a sense of relief.  Prior to a diagnosis, their child may have been struggling for a long time without the understanding and support they need; with a diagnosis comes an opportunity for their child’s needs to be recognised, to face less judgment and the potential to access improved support. 

Lived experience sources suggest that negative reactions such as being scared or overwhelmed often stem from a lack of knowledge about autism and fear of the unknown, as well as concern for the autistic person’s future and how they will access the support they need throughout their life. An understanding of autism based on outdated stereotypes, misinformation and stigma can also cause people to have a strongly negative reaction. 

Parents frequently ask us whether it is normal for them to feel guilty or to blame, for example that they ‘should have known sooner’, especially when a child receives their diagnosis at a later age and did not access support sooner. While this feeling is common, it is important to note that the signs of autism are not always apparent at a young age, which alongside long waiting times for assessment can cause a delay in receiving a diagnosis, along with the support it can bring. It isn’t a case of ‘fault’ or 'blame’. 

Evidence shows that parents who have a negative initial reaction to their child’s diagnosis often find that this changes over time, becoming more positive as they learn more about autism and their child’s individual strengths and needs, and access formal and peer support for their child and themselves.


'Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.'

– Miriam, Six years on: how has having a diagnosis of autism helped?

Evidence about the experiences of family members comes mainly from blogs written by parents of autistic children. More evidence is needed to understand the experiences of other family members, such as siblings of autistic people and the partners and children of autistic adults.
 

Support for family members

Formal support is available to autistic people and their families based on an assessment of their needs in areas such as social care, welfare benefits, education and employment. For more information about this, visit our page on Formal support following a diagnosis. In addition to this, it can be helpful to learn more about autism and access informal emotional and peer support. Examples of this include:

  • accessing training courses for parents and carers about autism 
  • learning more about autism, from sources including: 

          - books, blogs and videos created by autistic people and family members about their lived experience 

          - watching documentaries and reading articles about autism 

          - attending autism conferences 

          - accessing information and support from autism charities 

  • accessing online or local, in-person community forums and spaces.
     

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. 

Accessing social and support groups can help to validate your experiences (by meeting others who have experienced the same or similar things), reduce stigma, improve emotional wellbeing and enable discussion about strategies to improve your autistic family member’s wellbeing and family relationships. 

There are social and support groups for parents and carers, and for siblings and/or young carers, available in local areas and online. 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 and helplines, including those hosted and moderated by charities, for example:

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 local support services and social groups in your local area using our Autism Services Directory.
 

Experiences of family members

"So when, after four years of limbo, we finally got an autism diagnosis for our son, I couldn’t have been happier. Now I could understand why he behaved the way he did and I could actually do some research, learn about the condition and connect with others in similar circumstances. By learning about autism, I could find out what triggered certain behaviours and help to keep my son as happy and calm as possible."

– Louise, How do you feel when your child gets an autism diagnosis?

"Receiving our son’s autism diagnosis was a life-changing moment. Whilst it provided us with an explanation for why he had been struggling socially and developmentally, it also installed panic, confusion and uncertainty for the road ahead. For some, receiving that important diagnosis can unlock access to the right support but ... it can be even harder for autistic people in the black and minority ethnic community to get the support they need."

– Pam Aculey, What does autism look like? Raising a mixed race autistic son

"If your child was just diagnosed, I want to say this first. Take a deep breath. I know it can be scary. I know it can be overwhelming. I know the doctor probably filled your head with a million scary things about what your child will or won’t be able to do. So let me just tell you, no one knows what your child’s future holds. Not the doctors, not the specialists, no one. Autism isn’t a big scary monster, and I promise it will be okay!"
 
– Kaylene, Five important steps to take after your child’s autism diagnosis 

"There is no correct way to react to your child receiving an autism diagnosis. For some parents it can be a shock, others are worried, some are relieved. It's normal to wonder why or how a child is autistic. ... You could feel anger, guilt or even vindicated depending on your journey to this point. ...  Looking back what would I tell myself? ... Seek information and support ... You can often find autism parent groups in your area who regularly meet to discuss the issues that they face."

– Ann, What would I go back and tell myself when my kids received an autism diagnosis

"I’ve heard people say that when they had a diagnosis for their child, they went through some sort of grieving process over the life that their child will never have. Personally I don’t feel this way. Autism isn’t a death sentence. An autistic person just has a different way of processing and viewing the world. ... Your child is still your child. Information is power. Use the diagnosis as a stepping stone to learn more about autism and connect with others. Most importantly, use the things you learn to create a happy environment for your child where they can feel safe and grow as a person."

– Louise, How do you feel when your child gets an autism diagnosis?

"There is so much bad autism information out there, especially the hawking of sciencey-sounding ‘cures’ (there’s no such thing) or ‘recovery’ (ditto). But there’s so much good information, too! And the more informed you become, the more your perspectives on and understanding of autism and parenting will change — ideally for the better."

– Shannon Des Roches Rosa, After an autism diagnosis: 13 necessary next steps for parents

Links, resources and article sources

Related advice and support

What is autism?

Read more

Formal support following a diagnosis

Read more

What can I do if formal support is not offered or is not enough?

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.

View on YouTube

My diagnosis story: Finty

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

Watch the video

Related services
 

Online Community

Our online community is a place for autistic people and their families to meet like-minded people and share their experiences.

Join the community

Diagnostic services

Our specialist diagnostic and assessment service for children, young people and adults.

Autism assessments

Autism Services Directory

The UK’s most comprehensive directory of services and support for autistic people, their families, and the people who work with them.

Search the Directory

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