Talking about a diagnosis for autistic adults

A new autism diagnosis can be very validating but also might lead you to question a lot of things in your life. This 'new normal' phase may take some time to adjust to.

Often, after an autism diagnosis, relationships and families may come under a lot of focus and the family dynamics may change.

Many people have misconceptions about autism. This is often due to a lack of knowledge and understanding. It may be ignorance, but sometimes it feels cruel, and it still hurts.

It is not unusual for your family to be in complete denial about your diagnosis. This can also be the case with your partner. Whilst upsetting, these situations often resolve in time.

Family, partners and friends

After receiving a diagnosis, telling your family, partner and close friends that you are autistic can lead to mixed reactions. They may not be what you hope or expect.

You may be feeling excited at having validation you are autistic and want to share this. You finally have some answers about yourself. You hope they will feel the same and want to learn more about you and how they can best support you. However, their reactions can leave you feeling frustrated or invalidated.

Here are some considerations for you when preparing to tell family, partners and friends:

• Have easy-to-read literature on autism in adults on hand.
• Find examples of famous autistic people and use these as an icebreaker (e.g. how their differences relate to you).
• Some people may have difficulty accepting your diagnosis or feel uncomfortable talking about autism. People can be fearful of things they don’t understand.
• Some responses may invalidate you (e.g. ‘You don’t look autistic.’). Or they may respond with things like: ‘It doesn’t matter about the diagnosis; we know you best.’
• Let people know if you feel hurt by what they say and explain why.
• Give people time to learn more about you and autism.
• Surround yourself with people who will support and validate you.
• Find a network of like-minded people who ‘get’ you. This is especially important if family and friends are not supportive.

Upon diagnosis—coping with the feeling of lost time

It can feel overwhelming to receive a diagnosis or discover late in life that you may be autistic. You may have thoughts like: What could have been if you had known earlier? Would life have been different?

Some people feel sadness, some feel anger, some feel relieved and validated. All these feelings are quite usual and are part of the process of post-diagnosis/identification. These moments can be life-changing and set you on a different path, one of self-discovery.

It can take time to rediscover who you are, especially after what already seems like a lifetime of feeling out of sync with the world.

The feeling of lost time can be hard to cope with. You need to allow yourself the time to work through these feelings. It does take some time to rediscover who you are.

Diagnosis—it can feel like starting life over again

Your diagnosis can feel like starting life over again, undoing misconceptions about you, letting go of what other people may think of you and expectations of fitting in.

It is never too late to learn and make positive changes to your world. You don’t have to feel like you’ve lost time.

It is never too late to find out where you belong and be valued for who you are. Everyone deserves this.

Re-evaluate your life, your way.

It is okay to reflect on what could have been, but don’t stay there. You probably already know from experience what doesn’t work for you. Now, spend time finding out what does.

For more information, resources and support post-diagnosis, visit our dedicated resource Autism: What Next?