Support group for adult siblings of autistic people

A lot of siblings don’t identify as carers — but what does caring mean, exactly? Are there things you do for your brother or sister that you wouldn’t do for an adult without a neurodiversity? Maybe you provide support in social situations, answer the phone multiple times a day, help with managing finances, advocate for them with social workers, or support your parents who provide more direct care. How do you make room to “just be a sibling” when you’re also a carer (or when you take on helping roles that people with neurotypical siblings might not)?

Related information:

• Sibs – Am I a carer?
• Sibs – FAQs – Being a sibling carer
• Sibs – Are you taking annual leave to provide care? The Carers Leave Act may help change this
• Rachel – “I forget the world sees my sister differently to how I do”
• Carers UK
• Carers Trust
  

A lot of resources around money management and disability focus on managing benefit payments, having power of attorney, or deputyship/guardianship. But what about our brothers and sisters who do manage their own money — but might need guidance or make unwise/risky financial decisions? How do we support them? What might that look like when it is or isn’t working? What financial and/or emotional boundaries might we need to set to take care of ourselves?

Related information:

• Sibs guide – Decision-making
• Sibs – Taking action on safeguarding concerns
  

Some of our brothers and sisters might not be comfortable with their diagnosis (or with getting a diagnosis) and might be resistant to accessing (some or all) disability related supports. What can we do when our brothers or sisters need help but don’t want to ask or apply for it? How do we handle our own worry for them? How might we connect them with resources? How do we set boundaries when we (or our families) are the only ones they’re willing to ask?

Related information:

• Kate’s story: “My brother sends long abusive emails telling me what a terrible person I am – and then asks me to do things for him, usually expecting me to do them immediately.”
• Sibs – Coping with feelings
• Sibs – Taking action on safeguarding concerns (section on self-neglect may be particularly relevant for some)
  

Our autistic brothers and sisters might not show us that they care for/about us in the same ways that we care for/about them. Our relationships with them might look very different from those between our friends and their siblings. (Even other friends whose brothers and sisters are disabled or neurodivergent.)

How do we deal with relationships that might feel uneven? Where it feels like no one acknowledges that we’re putting out so much more than we get in? How do we recognise the ways our siblings do show us that they care about us? (Even if that doesn’t look like other people might expect.)

Related information:

• Rosie’s story – “The ideas that many people have of what a twin relationship should be can place a lot of pressure on the relationship”
• Josh’s story – “I am destined to care for Olly all my life, while Olly is destined to be cared for.”
• Sibs – eBook ‘Self-care for siblings’ (chapter ‘Your relationship with your brother/sister’, p.62)
• Sibs – Coping with feelings
• Sibs – Loneliness
  

Our autistic brothers and sisters might have more difficulty with or face additional barriers to developing both friendships and romantic relationships. That means that sometimes we might find ourselves supporting them – in seeking out and navigating those relationships or in dealing with frustration and disappointment around them. (Sometimes a sibling feels a lot more approachable than a parent).

How can we support our brothers and sisters to have safe and fulfilling relationships?

How do we invite these kinds of conversations? How do we set boundaries about the conversations we’re willing to have?

Related information:

• Choice support – free, 1hr webinar ‘Autistic loving – Supporting autistic people with relationships and sexuality‘ plus lots more books, research and resources
• Choice support – Supported loving toolkit – Wide range of resources for learning disabled and/or autistic people and those supporting them
  

A lot of our discussion topics centre around ways that we can or do support our siblings — but how do we make the space that we need to take care of ourselves? As they say on aeroplanes, you have to put on your own oxygen mask first, before helping with anyone else’s! Do you have any strategies for setting boundaries with your family? For remembering that it’s OK to prioritize yourself?

Related information:

• Sibs – eBook ‘Self-care for siblings’
• National adult sibling support group – “Guilt is nothing to feel guilty about. Give yourself a break!”
• East London adult sibling support group – “Many of us have grown up feeling that we have to be the ‘easy child'” (tips on boundary setting)
• Sibs guide – Talking to parents (includes section on boundary setting)
  

Here’s what you can expect:

• A friendly hello from our trained volunteer facilitator
• A sibling-only environment that’s safe, confidential and respectful of each member’s different circumstances
• Chat about sibling-related topics (see the list above)
• To share your experiences, tips, advice and information as a sibling and hear the same from others
• To give and receive emotional support

What isn’t included?

These are friendly and informal peer groups, where people give and receive emotional support.

• Facilitators cannot offer you one-to-one support
• The group cannot offer formal therapy or counselling

If you:

• Have been through a recent trauma or personal crisis
• Are in the very raw stages of a traumatic bereavement

You may benefit more from counselling than from coming to a group. Read our advice on how to find a counsellor. Some siblings have counselling and come to a group alongside this.

What our group members say about coming to a support group

“I always look forward to the meetings and leave them feeling a bit lighter.”

“I have met a fantastic group of friends who have always supported me when times are difficult and I feel a much stronger person as a result.”

“It is a safe and trusting environment”

“It was a relief to find I was not alone.”

“It’s a misconception that men don’t want to open up and talk, because we do.”

“After an evening at a group I feel re-energised and able to carry on with the job I have to do but did not choose.”

“I am not someone who connects very automatically with new people, but our situation is so specific that I felt a bond and sense of community from my very first session.”

“It was the first place I really felt I belonged as I had never had the opportunity to meet other siblings prior to the group.”

“I have often felt like there was something wrong with me, or that I’m too needy or immature, whereas I realise now it’s probably the opposite, and having that experience as a lonely sibling skews our perceptions of ourselves. I recently joined the group for adult siblings and it’s so nice to know other people are in the same boat.”

All our support groups are run by our trained volunteer facilitators, who are siblings themselves. They’re passionate about helping siblings to meet and support each other. Their role is to get in touch with new members, arrange the meetings and to help everyone in the group talk about sibling issues. The facilitators are members of the group too, and they will give and receive peer support like anyone else. If you’re interested in becoming a facilitator, register your interest here and we’ll be in touch when our next training session is announced. We aim to run the training once every two years (subject to funding).

Click on the topic you’re interested in, from the list above. We’ve included extra resources for each one that you can take a look at in your own time.

You might also find it helpful to:

• Read Autism: The Sibling Perspective, our collection of 20 experiences from 20 different siblings of autistic people
• Join our private Facebook community #Siblife, to connect with other siblings at any time
• Come along to an online support group

Please note that we don’t record sessions so that siblings can feel comfortable and confident sharing their experiences openly.