An autism diagnosis can bring a wide range of emotions that might be experienced at different times. It can also raise lots of questions. Here are some resources that may be helpful.
These resources will primarily be useful, I hope, to support parents/carers with a child who has received a diagnosis, also they may help while you are waiting for one.
Feelings of bereavement:
It is very common for parents to feel sad and to mourn/feel bereaved on getting a diagnosis, or being placed on the pathway. The diagnosis might also come as a shock, or feel completely unexpected.
Many of us mourn the life that we imagine our child might have had, or worry about their child’s future. We might feel angry about loss of opportunities or not being the same as other families. This feeling might resurface at difficult times, such as when a child is excluded or bullied, or when they don’t meet milestones when/as other children do.
What would we do to comfort a friend if they had experienced a bereavement or had a sudden shock? Kindness to yourself here is very important and not an indulgence. Ask friends and family for support, or if this is difficult perhaps think about meeting other parents in a similar situation. In Bridport (Dorset), this might be at ASCape, or a carers group or an online community chat. It is OK to grieve, to cry and to shout. GP practices can link into counselling services such as Steps to Wellbeing that might be helpful. Also, locally, we have the Dorset Recovery Education Service. They have online resources and video clips as well as online courses on various topics. I found their Making Sense of Grief course especially good. http://www.dorsethealthcare.nhs.uk
Express your emotions as feels appropriate and useful. Consider trying compassionate practices such as mindfulness, meditation, yoga, somatic movement. Try to make time for hobbies or activities that you enjoy, and take time out.
Look after yourself so that you are able to support your child and others in your family and so that they can see that it is OK to show emotions, but also how they might work through them. In an aeroplane’s safety brief we are told that you should put your own oxygen mask on first before your child’s, and this is definitely true in life. If we don’t care for and nurture ourselves first, it makes it very hard to support our children without risk of breakdown.
Consider meeting other families with autism. What are their children experiencing as they grow up? Do we need to be so fearful about their lives and experiences and what the future might hold. Try to meet online or in person, adults with autism.
Here is an award winning poem by Ava Gallagher about her experience of Autism: https://images.app.goo.gl/krNEosR5hCcrNPFv9
There are some great programmes out there which might help your processing: There She Goes, Atypical, Love on The Spectrum, Inside Our Autistic Minds are just a few. The new BBC series Austin has an autistic actor in a leading role. Great to watch on your own or with the family -Atypical is especially good to watch with teens I would say.
Also, see the interview with Bella Ramsey from Game of Thrones fame @BBCNews’ bio where she talks about her experience of autism.
Celebration:
Many families will want to celebrate an autism diagnosis. Maybe they have been waiting a long time for a diagnosis that they were expecting, maybe there are other members of the family who are autistic. For many children and adults a diagnosis can be a confirmation of what they were already identifying with, and it’s a relief to know more about themselves and begin to understand more. Some may hold a party or make an announcement.
In Dylan’s Story I identify some of the many strengths that autistics can have and the achievements and impact of autistic people. These can include: exceptional attention to detail, deep focus, strong memory, creative thinking. They can also be highly observant and have a remarkable ability to spot patterns. They can have/ and share a huge joy in their interests. They can form remarkable bonds with animals and the natural world. They can have deeply caring relationships with others.
Chris Packham has written and been extensively interviewed about his autism. His programme Inside Autistic Minds, on BBC i Player, shows both challenges experienced by autistic people and the contribution they have to make to the world, including a powerful interview with a non verbal autistic young man, Murray. You could look at the You Tube clips also “Autistic people need to be heard in this world.” Inside Our Autistic Minds BBC
Joining other parents and autistics might feel helpful, to fund raise, or advocate for change or set up a social group for other children/young people the same age as your own.
Look for the #actuallyautistic
I love the empowering outlook of www.reframingautism.org.au
Questions:
Hopefully a diagnosis comes with information from your health practitioner and links to local support, activities and courses. Many parents and adults will want to be better informed about what autism means for them, and this was why I wrote “My Story About Autism,by Dylan.”
There are new groups and organisations arriving on social media all the time that could be helpful. The National Autistic Society http://www.autism.org.uk has a huge number of resources on it’s site and courses that might be helpful. This includes a section on Diagnosis and they have an online community. They also offer diagnostic services.
http://www.reframingautism.org.au resources include an Autistic Welcome Pack and an Autism Essentials free course.
http://www.autism-unlimited.org is a large, Dorset based charity, that gives excellent advice and information, including “I think I’m autistic… What to look for” and “Working with the school.” They offer a diagnostic service for adults.
Other resources include:
“A Parent’s Guide to Autism Diagnosis. What to expect and how to support your child.” by Dr Sophia Mooncey and Adele Devine.
Organisations such as SENDIASS http://www.dorsetsendiass.co.uk and IPSEA http://www.ipsea.org.uk can be very helpful in terms of information you may need around a child’s education provision. Harmony http://www.theharmonycentre.org.uk in Bridport can provide practical and emotional support for parents and carers and over 18’s. Also, the Social Prescribing Team attached to your GP practice can give information and links to community support and resources.