So our son, who Dylan is based upon in My Story About Autism, is now twenty! I know, I can’t believe it either.

As he passed through the teenage years and into greater independence we wondered, and  often worried, about what would happen next. Our son has many interests and so much potential, but as yet he doesn’t work and has a team of wonderful support staff/tutors who come out to him. He struggles to socialise with other young people his age and relies upon us, largely, for organisation and entertainment!

We live in a wonderful town by the sea in West Dorset and are very fortunate to have so many opportunities for being outdoors and in nature, and a supportive community around us. However, West Dorset is resource poor in terms of educational and housing opportunities for young people with additional needs. It is more isolated than the rest of the county geographically and in many other aspects. So no shared/supported housing for someone like our son, and even if there were, his anxiety at the moment would make it hard for him to be in a setting away from home. So we started to think about loft/garage conversions. We also thought about our own needs – both of us working from home and currently having to accomodate our son’s support staff in the kitchen! We needed more of a physical separation and break from our son, whilst still being able to give him practical and emotional support.

Eventually a solution presented itself, and my husband, sadly, gave up his cabin where he had been working at the end of the garden and a new cabin was built on the site, last year which could be plumbed in. But when would our son move in?

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Despite being ready for several months, he was wary at first of using the cabin. We started by transferring his support sessions up there, especially cooking, with some amazing food coming out of the bijou kitchen. Weeks passed again and we began to listen to our son as he defined his own timeline, rather than imposing one. This took a lot of patience as we needed to do building work in the house which couldn’t happen until he moved out. Small things were achieved each weekend, such as building the computer desk and putting up shelves for his collections. Eventually we had to give him a six week deadline and in week five he ventured a night in the cabin, grumbling in the morning about things that weren’t quite right. But he never looked back from that point, continuing to go up every night. We had to pinch ourselves! But it had happened.

Now he sees us at mealtimes and in the evening, but is largely self sufficient otherwise. We are gradually getting some structure around housework and other areas of responsibility. It has been quite a journey. It feels as if he now has a launchpad into adulthood and independence. One day he may move away completely, but until then he can use the washing machine and we can talk about his day.

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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.

It’s Autism Acceptance Month this April.

I’m excited to announce that supporting ASCape, Dorset’s Bridport based Autism charity, I’m leading a workshop at Bridport Library on 25th April, 10.30-11.15 for parents and carers.

I’ll be introducing Someone Like Me: Dylan’s Story About Autism, which supports Key Stage 2 children with their understanding of their autism diagnosis.  With Ascape’s Outreach Worker Siobhan Dashwood, we will also be sharing experiences around diagnosis, offering signposting and identifying available support. The drop in will be relaxed and informal. Look out for accompanying resources for this session coming soon!

The session is for parents, carers and professionals. Bridport Library is very accessible,  the nearest car parking available is in South Street or Rope Walks, and there is limited street parking too. www.bridportlibrary@dorsetcouncil.gov.uk

Part of the proceeds from the first 50 copies of Dylan’s Story will go to support ASCape. Dylan’s book can be bought on the day or via www.karenwrightwrites.co.uk.

Autism Diagnosis. Our life changing journey.

Our son, whose experiences Dylan’s, My Story About Autism is based on, was diagnosed when he was 6 when wait times were shorter. However, I can remember the anxiety and confusion that surrounded this process, and how it changed our lives.

When our son was about 4 our paediatrician raised the possibility of his being autistic. I thought she was crazy, and when she said that she didn’t think it was helpful for our child to have a label we both agreed, and cheerfully scooped our child up and went home. Two years later a different paediatrician was more positive about the diagnostic process. We thought again and decided that at least it would rule autism out.

You see, our son is adopted, and social workers had been keen to put his differences and challenges down to poor attachment and trauma. We had been following their advice and strategies. However, our son was still not sleeping, finding changes to his routine challenging and not managing social groups or interactions well. As far as we were concerned he couldn’t be autistic though. He gave us eye contact, he loved his food, he didn’t line his toys up and he was cuddly. Everyone knows that autistic children can’t do these things – I thought!

The autism assessment itself seemed extremely random to me, and unlikely to bear any conclusive results. Watching our child play and then asking him some questions which he either ignored or was unable to answer or answer accurately seemed, should I say it, a bit of a stab in the dark. She did ask us lots of questions too, and some of these raised issues or behaviour which started to make me less sure. Some things that she said really resonated with our experience, such as does he like to watch the same TV programmes repeatedly? Well yes, there was the constant SpongeBob SquarePants viewing… But by the time we went for the results I had convinced myself otherwise.

When she gave us her diagnosis: high functioning  Asperger’s syndrome, I was confused again. What was Asperger’s syndrome and how did this relate to autism? We left the meeting in a bit of a daze. I started to cry. Hasn’t he got enough to deal with, being adopted, I said. My husband was much more philosophical, at least we know now what we’re dealing with, he said. And now we can get him the help he needs.

In the car I googled Asperger’s syndrome and was gobsmacked by what I saw. How could I have missed this? Our son was ticking all the descriptors: pedantic monotone speech, special interests, not being able to understand jokes or sarcasm, standing too close to others…

Still, I comforted myself, Asperger’s Syndrome is high functioning autism. He will not struggle as much as some autistic children. (Of course I was wrong, but it took me a while to work this one out. That was for another day). So there we were, at the start of our journey.  My husband was ready to get help, I was full of grief, and guilt that I hadn’t known our son was autistic. And then of course we needed to explain the diagnosis to our son – and that’s how “My Story About Autism, by Dylan,” began.

I’ve had to step away from my writing projects over a few months as my dad died and I have responsibility now for caring for my elderly mum and aunt as well as my son, who was the inspiration behind Dylan’s story.

Bereavement and autism are an interesting combination. My son reminds me that dying is natural, it is a part of life. Also, he has no anxiety or squeamishness thinking about death, and this is a relief, in many ways. I don’t want him to feel the pain that I’m experiencing. I’m curious though to know if he genuinely is ok.

I feel that I have to hide my grief to an extent, as he is not comfortable with strong emotions and although I think he misses my dad he does not cry or talk about him. He did not attend his funeral, but he did make a piece of music with his music mentor that was played there, it echoed the type of music my dad enjoyed.

He was close to his grand dad. Both could talk endlessly, and they had an easy comfort with each other. My dad shared his experiences of struggle and mental health challenge, helping my son open up as he grew older, and feel validated and understood.

Perhaps this is what we hold on to. I talk about my dad as much as I can with him and give him space to share. We’ve looked at lots of pictures together as I have been clearing my dad’s house and keeping the memories close. We kept some of my dad’s ashes. His final resting place is a long way away from where we live. Jack has chosen to bury them under an apple tree that we are about to choose and plant in the garden.

I was excited to open the post today and find my article about caring breaks in Your Autism magazine, published by the National Autistic Society. I’ve tried to highlight in the article the lack of care options and funding for those with autistic children and young people and other additional needs. Carers often feel forgotten, isolated and lonely. Many report that their own mental health is affected as well as their finances, and work opportunities are more limited.

Our son is now 19, but this doesn’t mean that getting breaks has become any easier, in fact it is now harder. Jack is autistic and has two anxiety disorders, as well as other comorbidities (scary word, it just means two or more conditions or diseases at a time). Whereas Jack was able to travel extensively with support when he was younger, since his early teens anxiety has made this increasingly challenging, and now he is unable to travel more than a few minutes from home, walking or in our car. Unfortunately  his issues, and our lack of family who can support, mean that not only can he not go on holiday but  we can’t get away for breaks without him either, for longer than a few hours.

Finding the right mental health support for Jack is critical to help him overcome his anxiety, and finally we have found a therapist who can support him, (we are still waiting on funding). We have found support for a few hours at a time, and are hoping to build this up as Jack feels better, and gets used to us being away for longer periods. In the meantime we have had to be creative, and the article gives a few ideas as to how others might build in some respite time in similar ways, and achieve small breaks at least. There are also some initiatives which, providing more support, and some with tailor made properties, allow families to have breaks together, such as spectrum-holidays.com and kolokodirect.com

​This summer I was delighted to have some work included in Green Words, an anthology written by local authors about all things green, nestling in the natural beauty of West Dorset.
I was feeling distinctly rusty, having been able to write little fiction during Covid, and up against the clock. But managed to write three varied pieces and be part of the launch night. This has given me the push I needed to get on with my YA novel and redouble my efforts towards publication of my Someone Like Me books.
Green Words was produced to raise funds for the Dorset Wildlife Trust and copies of the book are available at the wonderful Kingcombe Meadows Nature Reserve, near Dorchester.
www.dorsetwildlifetrust.org.uk

I took part in this month’s spoken word competition in Bridport called the Bridport Story Slam. Our voices this time where viewed and judged on screen. I  was pleased to be awarded a second place in a competition heavily influenced by Lockdown and Covid 19. This is my entry, based on the strangeness of the silence that cocoons us. It became a piece where I was also able to bring attention to the increased number of domestic violence incidents that are taking place, when partners  are not safe in their own homes.The silence was the strangest thing.

“Those bloody birds, can’t you hear them? Listen!” He thrust his mobile phone in her face.
“You recorded them?” she asked, rubbing her arm.
“They’re driving me mad!”
He was.
Apart from the radio at five, her own inner monologue, and the “bloody” birds, it was silent. No cars, planes and the only footfall the occasional visit of the postman to their box. Their neighbours had packed up and headed to the coast weeks ago. It was just the two of them now. And no pub to steer him to in the evenings. No work. Instead, he watched her. Even when she was in the shower.

Out in the garden that evening, the blackbird on the seedball took flight alarmed at a low shriek, followed by a crashing thud which echoed through the wood. The silence resumed. No-one would be coming. She calmly wiped the knife blade on the grass.