You & your waiting list: A survival guide
by Nikki Read BPhil, PGCE, MEd
Before we settle in for what is hopefully a reassuring chat about the stresses of life with a child with neurodivergence, I would like to say a warm welcome from the team here at Dr Pablo Jeczmien’s Practice Ltd.
We will be exploring the challenges around waiting for an autism diagnosis for both you and your child. Along side this, there will be a sprinkling of strategies that may help a little, ideas to work towards developing resilience for the path ahead and some approaches to ponder post diagnosis.
Where to begin?
My journey through the diagnostic process began 20 years ago. I am a very proud mum to autistic twins, now aged 24, who share between them a variety of co-occurring conditions including ADHD, epilepsy, dyspraxia, OCD and visual processing disorder amongst other challenges. Our diagnostic journey was very different to todays. For us the waiting list for an autism diagnosis, as it should be, was a matter of months and the whole process was completed within weeks by a multi-disciplinary NHS team in Surrey.
Today waiting lists seem unending, peppered with compulsory programs on neurodivergence that may, or may not, be relevant to your family. In my home county, the list for an autism diagnosis is heading towards 3 years. Concerns about lack of appropriate support, poor understanding in schools and the stress of living with a child that seems different without understanding how best to support them does not lend itself to a 3 year wait for answers and guidance.
Where else can I turn?
There are many private clinics available offering diagnosis, some without even meeting your child. At the beginning of this path, it can be hard to know which practice is right for you and your child. Cost is, as it always will be, an integral element of the decision-making process. All associated costs should be clearly broken down as should the process itself. Here at the Dr Pablo Jeczmien’s Practice Ltd, we explain the individual stages of the process, ensuring that there are no hidden costs for our families. Wherever the autism assessment takes place, there should be a developmental history, a face-to-face interactive session with your child (if required; no child should be subjected to unnecessary screening). There should then be a detailed diagnostic report and the offer of a feedback session to explore the diagnosis with you; all under the umbrella of a multi-disciplinary team. Anything less is too little and risks integrity. Anything more is, perhaps, more about fees than the child. We ensure that our highly experienced team follow best practice throughout your child’s journey.
Whichever path is right for you and your child, how can you best manage the build-up to this process? As a parent of neurodivergent and autistic twins, I can recall the emotional rollercoaster. Why was my younger twin behaving so differently from his peers? He was nothing like ‘Rainman’. How can I get him to sleep? Why does he sit away from his friends at nursery? Why does he lash out? There are so many questions and, nowadays, such a long wait for answers.
A positive outlook
Perhaps the key component to surviving the waiting list is focusing on positives. It can be hard to find things that are going well when there may be phone calls home from school, meltdowns over the wrong socks or the extreme tiredness that comes with a child that does not seem to need sleep. The very process of joining this path can feel like little more than a litany of negativity and failure. Listing challenges and differences is so very far removed from anything positive, but they are there. That little moment when your child perhaps tries carrot for the first time or slips their hand into yours for tiniest of moments or shares an interest with you.
Recognising these moments is not always easy, remembering them is even harder. I have two recommendations for parents on this journey. When you have spent a few hours discussing or detailing all the difficulties you and your child experience, take a few moments with a fresh sheet of paper, a cool drink or refreshing herbal tea and write 10 amazing things about your child. These are mine:
- The most amazing crystal blue eyes, full of sparkles & laughter
- Encyclopaedic knowledge of Star Wars
- Incredible perseverance in working through therapies
- Extensive knowledge of the corniest jokes imaginable
- Ability to laugh in spite of numerous daily challenges & health issues
- Superior knowledge of the role of each piece of lego my feet discover lurking on his floor
- Unequalled skills in the field of poking objects into nostrils that really shouldn’t fit
- Endless supply of kindness and enthusiam
- Ability to paint emotional pictures with very few words; “my eyes are full of hearts for you.”
- Incredible ability to persuade me to watch Coraline…again!
This is a very different list from the one I wrote when he was four but we are now twenty years into our journey.
The second recommendation is to grab a jar, something like a Kilner jar, and write about a positive moment or an achievement and pop it into the jar. You can do this together if your child is able (and willing) and maybe even decorate the jar; it’s pretty much up to you. At a particular point in time, New Years Eve perhaps or at the end of an especially challenging day, pop it open and read these special moments together as a reminder of the positive experiences that so often get lost along the way.
Strategies
Often, we can become so absorbed by the mechanics of waiting, chasing agencies, GPs, CAMHS etc. and forget that there are some little steps we could take that might make a small difference to the daily challenges. Perhaps you could explore some basic strategies that work well for autism and can be supportive of other neurodivergence. We can begin to build our strategies long before official recognition of our child’s needs.
Sensory play can be great for reducing sensitivities whilst also having fun. Wheelbarrows, wobble boards, bubble blowing, sucking jelly through a straw (carefully), straw ping pong; all of these are fun but have a sensory focus to them and require little language. Making bread for pizza bases is a great activity for an older child or young adult. Kneading is therapeutic, provides tactile information and is usually a winner for tea. Remember that not all therapy is hard work, but even little tasks can take time to establish for a child or young person with autism.
A check to see if there might be some processing delay for our children is quick and easy to try. Make a simple request and count how long it takes for your child to respond. Remember to use their name to clue them into the request. Autistic minds have to work much harder to process everyday occurrences. This often leads to slight delays processing verbal information and requests. If we start by reducing the language we use, count to 10 and then repeat the request without any changes we are providing processing time and offering an opportunity. Each time we make a change to a request, it is a whole statement for the child to process. Reducing language and increasing processing time is especially important of your child is feeling anxious.
Another possibility to consider is joining in with a special interest or seeking out a simple joint activity to do together. If this can be based in sensory play, that’s even better but not essential. There are various stages to play and neurodivergent children may take a slightly slower approach to these stages. By joining in with them where they are, we can help them to build skills but only when we go at their pace. This could be an alongside activity such as making slime, water play, building a puzzle or Lego together or playing a game online. Alongside is literally that, sitting side by side. By removing face to face interaction, we are removing social pressure and, hopefully, making the activity more enjoyable.
My last piece of advice for this post is to build structure into your child’s day. There are few neurodivergence that do not respond well to structure; autistic and ADHD individuals can flourish with the right schedule in place. Scheduling not only chunks the day into manageable activities, it also provides the predictability that often eludes autistic individuals. A timetable can be pictorial (do2learn has free images and lots of examples of schedules), written and, as adults, we see them as to do lists. Tasks can be broken down into sequences and our young people will have a better understanding of what is happening next, hopefully reducing some of their anxiety.
Be kind to yourself
It is also so important to look after your own wellbeing during this time. The impact of realising your child may have autism can be quite overwhelming. Having to then battle for the right to have this confirmed is exhausting. However long this takes, they will always be your child regardless of any diagnosis. BUT it is absolutely okay to experience a variety of emotions through your journey with your child; it is your journey too. Feeling sad, a sense of loss, and fear for their future are incredibly common responses. I cried at each separate diagnosis my sons were given for the first couple of years. Not for myself but for what I thought they might be missing out on and for the challenges they would have to face. Over time we developed better and healthier mechanisms to ensure that these feelings did not become overwhelming.
As appealing as it may be to unwind with a glass of wine after a hard day, it may not be the best solution when your child is going through a series of challenging days. Reliance on quick ‘fixes’ can build steadily into unhealthy habits. Parenting a neurodivergent child is undoubtedly a marathon not a sprint. A healthy diet, exercise and tools to develop resilience can make an incredible difference. Many of these can be done together with your child. Exercise is fantastic for individuals with ADHD, providing healthy hits for a serotonin seeking brain. Similarly, so many exercises can provide a healthy sensory outlet for autistic individuals that are not yet able to participate in team sports with elevated anxiety. A family bike ride or run is achievable and there are many specialist centres for those that need adapted equipment. Our understanding of the impact of the gut microbiome on the brain is developing and providing new mechanisms to improve not only our lives but outcomes for our children and young people.
We also need to ensure that we maintain a healthy mind as part of building resilience. It is not unusual for parents to experience feelings of guilt, have difficulty understanding why their child behaves the way that they do and to experience poor mental health at different times throughout this journey. Planning the perfect Christmas only for your child to be overwhelmed and unable to participate may be sad, frustrating and worrying in equal measure. Feeling frustrated at the failure to access a diagnosis and the right support can exacerbate this. It is helpful to find healthy approaches to weather these times. It can be as simple as 5 minutes with a cup of tea whilst your child safely plays on their favourite game.
Our clinical team provide a one-stop shop, supporting the family, carer and child through diagnosis, exploring movement and tailored nutrition whilst also supporting the development of resilience. Additionally, we provide blogs and will be introducing brief workshops and blogs. We aim to provide some comfort as you continue your pathway leading up to and following your child’s diagnosis.
