6 Tips for Parents Following an Autism Diagnosis
With any diagnosis, confirmation can bring a multitude of different, contrasting feelings, from relief to fear
Therapist Janine Hodge offers six tips to parents to help them work through these emotions and support their child after an autism diagnosis
We have therapists and counsellors who specialise in working with clients with autism spectrum disorder – find yours here
Following an autism diagnosis, some parents and caregivers feel a sense of relief. Things perhaps now start to make sense. Maybe your intuition was right all along and you can finally seek the support that your child needs!
Yet, for many, even with initial feelings of relief, an autism diagnosis can be a very emotional time. If you are currently experiencing this, you are not alone. According to the National Autistic Society, one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK. With every new diagnosis, comes an emotional response. Frequent responses expressed by parents within the therapy room can include: shock; disbelief; denial; anger; rage; sadness; confusion; fear, shame, guilt and powerlessness.
Therefore, this article explores the potential impact of an autism diagnosis and aims to provide useful tips to parents in managing those difficult feelings and concerns. The information within this article comes from my own experience and learning as a therapist working with children and adults with high functioning ASD and through supporting parents, caregivers and family members.
What is autism spectrum disorder?
As a spectrum condition, autism affects people in different ways and to varying degrees. It is usually present from early childhood, although it may not be identified until later childhood or during adulthood. It's considered as a complex developmental condition that tends to impact in two different ways. Firstly, through difficulties with social interaction and communication and secondly, through restricted or repetitive behavioural patterns.
Whilst many autistic people can live independently, they may still encounter difficulties that require additional support. On the severe end of the spectrum, people with autism are unlikely to develop functional speech, and many will require more intensive support throughout their lives.
Hearing that your child may permanently struggle with communication, social interaction and emotion regulation or that they will need intensive support throughout their lives can be very overwhelming and difficult information to process. So, let's look at a few things you can do to help manage those fears and concerns.
Tip 1: Allow space for your emotions
Emotional responses are inevitable following an autism diagnosis Whatever you are feeling right now, it's okay and it's understandable. There is no right or wrong way to deal with an autism diagnosis. It is likely that you may be experiencing some or all of the following, which may or may not be dependent on the severity of the diagnosis:
Hearing an autism diagnoses, can feel like the rug has been completely pulled from under you. Suddenly your world has been re-defined by the word 'autism' and possibly you are not really sure what that means. How do you manage something that you may have little knowledge of and how will this impact on the quality of life for your child, you and your family? As parents we strive to ensure the best we can for our children, we imagine them fulfilling their hopes and dreams and us being a connected part of their world. We imagine their future perhaps from our 'neurotypical' lens, so during the moments of that diagnosis, it's understandable if the future suddenly feels under great threat.
- Shock, disbelief and denial
Shock, disbelief and denial are natural responses to this threat and the fear of the unknown. When the information creates too much of a disturbance, we may use denial to protect ourselves. Here, it is common to seek a second opinion, blame parenting or a 'lack of discipline' or search for a different explanation.
This can cause further implications if you and a partner are not on the same on page. If one of you is in denial and the other is ready to accept, this can create further tension. Feelings around the autism diagnosis can then become mixed up with feelings of frustration, anger and maybe loneliness that your partner is not able to see things from your point of view.
- Confusion, loss and powerlessness
Having none or little knowledge of what an autism diagnosis means for you, your child or your family, can be quite confusing and anxiety provoking. It's understandable if you are sobbing uncontrollably because you are grieving the life that your child will never have. The life view and future hopes you had mapped out that have just disappeared. It's natural to want to protect your child from the harsh realities of the world, the condition itself or a potential lack of acceptance and judgement from others. It can feel as though autism is in control and you are powerless in your role as a parent or caregiver. It's understandable if you start to shut down because this new information is just too overwhelming to take in.
It's ok to feel angry and it's natural to think 'why me', 'why did this have to happen to my child' or 'this is so unfair, what did I do to deserve this!' It's possible that you may feel anger towards other families and children that will grow up, have families of their own and mature. Anger is a difficult but unfortunately, necessary part of the grief cycle and it can also be a positive emotion. It can drive us forward into action, gathering the information we need to feel more in control of our new situation.
- Numbness or void of emotion
For some who have a conditioned response too 'be strong', it may not feel okay to show any emotion. Feelings may be suppressed so that it's possible to get on and deal with the situation at hand. However, be aware that this may catch up with you and cause sadness or depression later on down the line, so the next tip is really important.
Tip 2: Breathe
If you find yourself, tail-spinning or numb and void of any emotion, try to stop for a minute and breathe. Somehow, you have managed to get through to this point. You will find a way to work through this. Take some time out to gather your thoughts to help process the news and ground yourself. Now may be a good time to reach out to family and friends for support; Talk to someone whether it's someone you know or a therapist who can support you on this emotional rollercoaster.
Tip 3: Your child has not changed after the autism diagnosis
Remember that your child has not changed. What's changed is that you are now seeing them through a different lens. They are still the same child that they were before the diagnosis. Every day since your child was born you have been parenting and you have been doing the best you can. Continue to do that and whilst you may be spiralling while you are navigating difficult emotions following an autism diagnosis, remember that you can and ARE parenting the best way you know how. Emotional states are temporary, they pass and over time you can adjust, learn and reclaim your inner strength and power.
Tip 4: Do your research
This is where you can start to feel more in control. Learn about autism and any specific related condition that your child may have. There are many books, research, conferences and social media groups that can support you and increase your autism awareness. You can also arrange a GP referral to access NHS intervention packages for autism.
Tip 5: Build trust and emotional attunement with your child
You are living with autism every day so even though you may feel out of your depth you already have a greater understanding than most. What's important now is YOU and your understanding, that in order to build trust and emotional attunement, you have to build that bridge and meet your child where they are at in their development. We are all unique individuals, as is every autistic person in their own right. Their support and coping strategy needs will also be unique.
Listen, observe and be open to how and what your child is wanting to communicate; learn to understand both their triggers and yours and what support they need. Your child will communicate with you in their own way and it may require you to tune in to their non-verbal communication and energy level to understand the world from their perspective. The more perceptive you are and the more you tune in appropriately, the stronger your child's trust in you will become.
This is similar to how I would work in the therapy room. For me, as an integrative therapist, it's not about the label, it’s about the individual and exploring their difficulties from their perspective, for them to be seen as the wonderful and unique person they are. acknowledging their own strengths and skills and exploring together ways of living that are more in harmony with their natural way of being, as opposed to finding ways to 'fit in' and adapt to a neurotypical way of living, which simply isn't authentic for them. A person-centred approach along with CBT, and play therapy seems to work well in supporting positive mental health.
Tip 6: Build attunement with other family members
Communicating with your partner from the diagnosis stage and beyond is key. Understanding where you are both at in your process and finding ways of working together in supporting your child is paramount. It is likely that an autistic person may deeply experience the emotion and energy within the room and react accordingly, so you owe it to all of you to work at supporting each other and working through any difficult emotions or triggers.
Also, pay special attention to any other children within the family unit. Often, they too have difficulties with their sibling's diagnosis and the impact it may have on them. Their needs are just as important, even if they are not requiring so much of your time and attention. Quality time together where they can also be seen, heard and valued in their own right, is vital to their own resilience and mental health. This is where having a strong support network around you can be really helpful in managing your time. not only for family members but for finding time for YOU too. Therapy can often be a great space to explore and work through everyday life and emotions around living with ASD.
Useful Information following an autism diagnosis
- For NHS Royal Free intervention packages
- For information and advice about autism and learning disability, contact Mencap Learning Disability Helpline.
- Find out more about Mencap's services and the support they can offer, or search for a local group near you.
- For autism support, visit The National Autistic Society's About Autism pages.
- Call the Autism Helpline which is available on 0808 800 4104 from 10am-4pm, Monday-Thursday, and 9am-3pm, Friday.
- For Pathological Demand Avoidance (PDA), contact the PDA Society.
- The Challenging Behaviour Foundation (CBF) can also offer support and advice if your son or daughter displays challenging behaviours. Visit the CBF website or call their family support line on 0845 602 7885.
- Getting support for the rest of the family is also important. SIBS can help brothers and sisters to come to terms with their sibling's disability. Visit the SIBS website or call 01535 645453.
Janine Hodge is a verified welldoing.org therapist in Dunstable and online. She is the founder of Courage2Be Counselling Services and specialises in working with children and young people using creative and play therapy techniques and principles.