I often get asked lots of questions by parents looking for support for their children. Naturally, parents are keen to find out who I am and what I can do to help their child. These questions range from how can I help their child to how many therapy sessions might it take to for their child to feel better. Disappointingly for parents and carers, there are no certain answers, as each young person is as individual as their journey that has brought them to be seeking therapeutic support.
I am extremely mindful, empathic and understanding speaking with parents, as many of them have a long journey in seeking therapy support. This creates overwhelm and in some cases, desperation, because they have been searching for such a long time for support for their child. They want to do the best they can and seek the most appropriate type of support.
I know they feel like this, not because I am an amazing professional, but because I have been that parent. I have walked in their shoes and trodden that journey. I know what it feels like to be let down time and again, to have hope but then be disillusioned and disappointed along with the frustration that follows.
Being your child's support yourself
I often share some suggestions with parents for how they can support their young person themselves. Indeed it was, in the end, the only thing that helped us, although I sought personal therapy for myself to help me have the courage and confidence to make some changes. We'd been deemed "too difficult" by many professionals and it left us feeling our difficulties were too complex; that we were too complex. I knew that wasn't true. We just needed someone to really listen.
So I thought it would be good to share with SNJ the therapy resources that helped us the most and that I know can help you too. This post is not a magic wand or a solution to everything you've been through. Sadly there is no such thing. It is, however, a start and is hopefully something you can share with other parents, practitioners and professionals you meet on your journey.
You know more than you think
When I started on my parenting journey, I thought I hadn’t got any experience of children with additional needs. Little did I know that a diagnosis in my forties would banish that myth completely. Over the years, I'd just learned plenty of coping strategies.
Using reliable information on the internet is key. But there is SO much out there, where do you start? Of course, a search through SNJ will provide you with lots of information - there are well over 1000 posts here. Aside from SNJ:
- Contact charity is a good starting point for information and for signposting. Also checking out whether the disability or condition you are researching has a national support charity.
- For those children whose condition is undiagnosed, SWAN UK can be a reliable starting point
What are you looking for?
Understanding what you are looking for is important – is it help, support, advice, professional therapy, or just somewhere to rant and offload? That will help direct you to where you need to be. Social media has lots of support groups for a myriad of things - Facebook has support groups by the dozen.
Where are you on your journey - are you at the early stage of diagnosis or somewhere further down the line? Can you offer advice and support to other parents? Locally, look at things like Homestart or the YMCA in your area as they often run groups for parents of children with special needs. Check also on your council's Local Offer website, which should be able to provide this information.
Therapy for behaviour
The biggest area that I get enquiries about centre around behaviour. This is often a very emotive aspect for families wanting some harmony. I often explain that to achieve any aspect of this will take a significant shift in the approach from parents. To "lead from the top" is often key, but you need the right information and support to do this. Parenting is incredibly tough and the parents I meet are often highly resourceful, courageous and determined to support their child(ren).
Some useful resources for autistic people
So where to start? Anxiety is often the biggest factor in any behaviour seen as challenging – See my article on autistic anxiety for SNJ for more information.
My therapy work mainly involves working with autistic individuals. As an autistic therapist, I would always suggest that parents look to other autistic or neurodivergent therapists, advocates and speakers when seeking support.
Some resources (paid-for and free):
- Alis Rowe runs The girl with the Curly Hair
- Aucademy hosts regular webinars and is a fantastic resource for both parents/carers and professionals
- The autistic coffee shop with Tigger Pritchard is on Facebook – Tigger also host podcasts on Spotify.
- Harry Thompson shares lots of information on his website and Facebook page. He focuses on the autistic Pathological Demand Avoidance (PDA) profile. He says it how it is. But whatever you, don’t ask him ‘How can I get my child to….’
- The Nurture Programme comes widely recommended and is run by Jodie Isitt with Laura Kerbey
- The autistic advocate writes extensively about supporting autistic individuals.
- There is also Jessica Matthews who writes at https://pathologicaldemandavoidanceaprofileofautism.com
- My fellow SNJ columnist, Sienna Castellon, has written ‘The Spectrum Girls Survival Guide’ and has a website at Quantum Leap
- Purple Ella and Ask an autistic on YouTube are also good.
Others worthy of mention are Dean Beadle, Speaker, Autistic Not Weird, Joe James, the autistic photographer, Not Raingirl, The Neurodiverse woman. All are autistic and working hard to spread the importance of autistic acceptance and authenticity. They have a variety of social media accounts/pages/profiles. These are just a small selection, but are a good place to start.
Using declarative language
One thing that you as parents can do is learn more about the use of declarative language. Declarative language supports the learning style children with learning and social challenges. By adopting this approach you will be enabling, over time, your child to adopt this approach in both their inner and outer worlds.
Some examples of declarative language might be ‘I see everyone has put their shoes on’ rather than ‘put your shoes on’ or ‘I’m about to serve dinner’ rather than ‘Come and sit at the table for dinner’ – Of course it will be trial and error and a lot of practice, but this method does help reduce conflict in families. For more information take a look at Linda K Murphy’s (PDF) resource, which explains this approach in greater detail
There are other people out there who can also help. Yvonne Newbold runs sessions and hosts webinars on challenging behaviour specifically related to children with disabilities.
Learning more about Non-Violent Resistance can be a life-changer. Many parents say it has helped their situation dramatically. Sarah Fisher has written a handy guide to this called ‘connective parenting’. Sarah also has a website here
Claire Wilson writes and works extensively about anxiety and hypervigilance in children – Her focus is Stephen Porges’ Poly Vagal Theory and Neuroception. She has written ‘Grounded’ and runs Chew Initiatives and Grounded Grown-ups, focusing on how being a grounded and safe adult will help reduce behaviour that challenges. I was an ungrounded adult, reactive because I didn’t want to feel I was letting my children down. I’d frequently overcompensate, which meant I applied ridiculously high standards to my parenting. This contributed to preventing them from finding their own level of emotional regulation. Becoming more grounded helped me and my family enormously It is this approach that I adopted a while back and I know it really does help when applied consistently in everyday life.
Understand your own trauma
Understanding the impact of your own childhood is also a key aspect of supporting your children. A survivor myself of childhood trauma, I know how important this is and how painful it can be at times. But it is worth it in the end. It’s a continual journey involving a lot of healing, learning and of discovery.
Learning about intergenerational/transgenerational trauma can be helpful too; trauma that impacts generations of families. Even though the individual may not have experienced the trauma themselves, it doesn’t mean it won’t affect them.
Trauma does not necessarily mean experiencing something like a car crash or witnessing an armed robbery. It is anything that overwhelms the nervous system's ability to cope – a sense of powerlessness or a betrayal. See more on this therapy website about the differences in types of trauma and here for how the body responds to trauma and how this may impact you and your relationships.
School can also be traumatic for autistic children. See more about this here in my SNJ article "How can children be traumatised just by going to school?"
Invalidation trauma is a significant aspect of autistic trauma – ask any autistic and they will, sadly, probably have an experience to share – An Autistic Advocate shares here their post on autistic invalidation.
Co-regulation / Dysregulation
There is so much more I could add and I think I will do so in a separate post as otherwise, this will definitely cross the TMI boundary. I would like to provide more information on each paragraph to help you on your parenting journey.
To finish, I would add that enabling your young person to co-regulate with you, e.g., do not try to calm a stressed or overwhelmed child when you are stressed and overwhelmed yourself. It is impossible to regulate another person when you are dysregulated (anxious, frustrated or angry) and is probably one of the single most useful pieces of information I have been told. The above information, if you choose to use it, will support you in beginning to achieve this.
Lastly, be kind you yourself when things don't go as planned. You're human and you are going to slip up – I still do! Acknowledge, apologise and move on, is often the most effective approach and shows your child that making mistakes is okay.
If you do feel you need support to adopt this approach then do get in touch (I can’t promise to have availability) or contact Affinity Hub, a resource created by Joanna Griffin, who has written a book all about parent carer emotional wellbeing (our current giveaway)
- Read more about Angela and find all her SNJ posts here
- Emotional Wellbeing in Parent Carers – Day by Day book giveaway
- The emotional impact of parenting a disabled child
- Children with SEND and the emotional impact on parents (research)
- Co-regulation in Autism: synchronising emotions, intentions and thoughts
- Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder
- How do people with autism experience empathy?
- The importance of learning resilience
- Guiding children with autism to learn co-regulation
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Don’t miss a thing!
- Therapy resources for families of children with additional needs - May 20, 2021
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- Calming Coronavirus anxiety in children (and everyone else) - March 13, 2020