All names have been changed to protect the identity of the parent carer and child.
Carers Manchester Contact Point talk to many parent carers whose children have autism. Vanessa, one of the parents we’ve supported, has agreed to talk about her personal experience, and we thank her for sharing.
Strengths and challenges
Vanessa explains, ‘I’m a mum to my beautiful, funny and artistic teenage daughter. Being a parent of an autistic child is a massive learning process. You have to grow a thick skin, develop the patience of a saint, and really look after yourself.’
Like everyone, autistic people have their strengths and challenges. ‘My daughter Sara has communication and sensory issues, and experiences a lot of anxiety, meltdowns and distress. Understanding people’s intentions and social norms is difficult. To manage this, Sara masks her autism to ‘fit in’ – especially now as she’s a teenager. This is draining for her.
‘Finding the best approach to communicate and understand my daughter involves working hard to find solutions, responding to shifting situations; it’s full-on. I constantly remind myself that she’s not being unreasonable, it’s part of her condition. Being 20 steps in front of Sara to pre-empt things helps,’ says Vanessa.
The road to understanding
The process of understanding and accepting your child is autistic is extremely personal. ‘Initially I grieved when Sara was diagnosed with autism at six years old. I thought, ‘oh god she’ll never be independent or have a normal life’. But I’ve learnt a lot not only through books. I learnt to be the parent Sara needed me to be by studying Sara’.
Vanessa says that as Sara’s got older, she’s better able to explain what’s going and regulate emotions. ‘Things are better when I can be calm, take a breath, be patient, instead of rushing to sort things out. We’re more able to have a laugh, and make light. Instead of becoming distressed about something, Sara will play around and recognise, ‘That’s my autism mum!’ It’s a tonic, and makes everything feel normal.’
The importance of self-care
Vanessa is fortunate to have family and friends who support her. ‘Making sure you do things for yourself to re-charge, pays off. For me it’s going for a walk, swimming, singing and spending time with a friend. It helps me be the best I can be’.
Autism awareness
Through her experiences, Vanessa says she’s developed a deep appreciation of the hidden nature of autism. ‘I thought autism was something that you could visibly see. Now I know it’s not always the case. Often it’s invisible, that’s one of the biggest challenge for Sara’.
Vanessa says the most difficult part about parenting an autistic child is ‘dealing with the misunderstanding and judgements’ – at times, even from her nearest and dearest. And when this is experienced in public it impacts upon everyday things and special moments.
‘I don’t want my daughter to be marginalised, misunderstood’ says Vanessa. She feels that a deeper understanding of autism is needed so autistic people aren’t denied what they should have as a matter of basic entitlement – from employment opportunities to a supportive benefits system.
Getting support
Vanessa has often felt alone but has found great strength from others. ‘I’d encourage anyone to get peer support from parent carer led groups on Facebook, and in local and national organisations. We just get each other. I’ve also accessed Short Breaks and the Local Offer. There is help out there, it’s about finding the right fit for you and your child. Carers Manchester Contact Point really listened and understood my situation. They worked with me to ensure I got the right practical and emotional support. I feel more connected and supported than ever.’
Looking ahead
Vanessa is hopeful for the future and appreciates where Sara is at. ‘I have to constantly shift gears as Sara grows but I can see her flourish in ways I never imagined. She has comfortable relationships with adults, is developing healthy friendships with her peers, and has a passion for making art. She’s forging her own path to independence.
There will always be ups and downs but I’ve learnt so much about what I need to be as Sara’s mum.’
