As a parent, when we sense that something is different about our child, this can be just the start of a long journey towards seeking clarity and a diagnosis. When a child is diagnosed with a condition such as an autism spectrum disorder (ASD), some feel relief, whilst others experience complete shock. Parents can feel overwhelmed, stressed, and even grieve as we realise the life we once knew is lost.
Whatever your personal experience, a diagnosis can actually be a time for positive changes for the way forward.
If I have learned one thing with my own son and his plethora of diagnoses, no diagnosis defines your child, it is simply a medical explanation. Whilst the life you knew and trusted may change, your child is still the same awesome person they always were. With a diagnosis, we can start to help them be even more themselves by learning what their strengths and abilities are and support them in using these qualities for their highest potential. As your child grows up, learning about their diagnosis and its strengths can help them to achieve a greater understanding of who they are.
TAKE YOUR TIME
When our son was diagnosed with autism after an eight-year battle with schools and agencies, I went on a full-on mission to get everything in place with immediate effect. Not only was it exhausting as a parent, but also overwhelming for my child.
Slow down and allow the diagnosis news to naturally unfold so that you are aware of your physical, mental, and emotional health.
Do not suppress thoughts or emotions, as they will inevitably resurface in the future. A diagnosis can trigger a grief response, so allow emotions of anger, guilt, denial, or relief to come to the surface. This process is entirely natural and leads to healing, acceptance and a clearer future.
THE POWER OF NOW
In life we have a tendency to focus on the unchangeable past rather than our current reality. I know I dived into the past in an attempt to process feelings of guilt, believing I was somehow to blame for my child’s condition. I have witnessed other parents blaming themselves for not noticing their child’s symptoms sooner. None of these thoughts are helpful and if we keep living in the past, we are not present in the now, which is right where our child needs us to be.
YOU ARE NOT ALONE
When we first received our son’s diagnosis, we told very few people - partly due to his request not to share the information, but also because you can feel so alone being a parent with a child with additional needs. For months I carried on alone, trying to balance work and family life with a glimmer of normalcy. The truth is we are never truly alone, but we can tend to isolate ourselves or push people away. A brief search online showed me just how many professional support groups and resources are readily available to us.
AN IMPERFECT BALANCE
Perfectly imperfect is a great way to live - no striving for perfection, just trying your best each day. A diagnosis is just one part of our life, so it is important that we strive to create balance. It would be so easy to be swept away in an array of autism workshops, health appointments, and calls and emails to the school and support agencies, but you are more than this. You are a parent, child, friend, work colleague, and more roles too. Take time to think how to spend time in all areas of your life, like you would have done pre-diagnosis.
HELP OTHERS TO HELP YOU
One of the difficulties that we can face in life after diagnosis is the lack of understanding from others. Even our closest friends and family members can cause us to form barriers as they do not understand what it’s like having a child with an ASD diagnosis, or know about the condition. As you learn more about your child’s condition, share your knowledge.
RALLY UP THE TROOPS
Back in my days as a student nurse I had a wonderful lecturer who used to tell us to encourage patient’s family members to ‘rally up the troops’ during times of need.
As parents we tend to worry that we are burdening others, but parenting can be exhausting and burnout is a real issue, so start asking for help. If you do not feel comfortable with others looking after your child, allow them to look after you. Suggest preparing meals, help with household chores or errands, or committing to a weekly walk with you. It is during challenging times that our friends and family can often feel helpless, so you may be surprised by how much they love having a purpose and role to play.
When did you last take time out for just you? Life can pass us by in a collection of working life, parenting, day to day chores, and rarely with time to fully engage in what it is you want from life. As parents, we often sacrifice our own wants and needs to focus exclusively on our children, but our own health is imperative too. Schedule in at least ten minutes each day just for you.
FOCUS ON THE POSITIVES
Despite all your best efforts, there will be good days and less favourable days. You will think that you have nailed that tool you learned at the recent workshop only to be confronted with a meltdown. Focus on the positive, even if some days you need to search harder and longer to find them, they will be there. If you notice that you are feeling sad, hopeless, or overwhelmed for six weeks or more, seek advice from your usual healthcare professional.
CHOOSE YOUR BATTLES
The presentations of autism are so diverse, with behaviours varying from silent withdrawal to ear-piercing confrontations, they can make family life highly unpredictable and stressful. These presentations do not always respond to your typical parenting strategies, so we become frustrated, and often add fuel to the fire, exacerbating the situation.
If you do not know how to act in the moment, detach yourself from the situation and, if safe to do so, walk away for a few minutes. When we are fully in a situation, we cannot always see the best way forward.
Again, if you feel such scenarios are impacting on your own health, research local specialist help, that may be able to suggest different effective behaviour strategies. You could try the nursery or school key workers, Autism Concern, or Information Advice and Support Service for Special Educational Needs and Disability in Northamptonshire (IASS).
Shelley F. Knight is a nurse turned author and podcast host who provides an eclectic blend of clinical, holistic and spiritual expertise in her specialist subjects of Positive Changes, Spirituality, and Grief.
She is founder and host of Good Grief - Northampton Death Cafe, a safe space for people to share their grief experiences, with an accompanying Facebook page to support others beyond her home county of Northamptonshire.
Shelley’s second book, Good Grief: The A to Z Approach of Modern Day Grief Healing is available to pre-order from John Hunt Publishing ready for 24th September 2021.