Firstly, don’t panic. Nothing you do will fundamentally change your child, so take a deep breath.
I felt drawn to writing something about this after quite a few friends came to me privately over the course of the past year and asked me about their children or friends children. Firstly, I need to say that I am not a qualified Paediatric Consultant, Educational Psychologist, Speech Therapist or Occupational Therapist. However as a parent of an Autist who is publicly ‘out’ and whose diagnosis we now openly discuss with friends and family, I am really happy to chat to other parents who are mulling over the issue because I appreciate how terrifying a thought it can be.
A little about our story; Our son was given a diagnosis at 5 years old after a wait of 18 months on our local CAMHS waiting list. We approached our GP after a chat with a friend who was an Educational Psychologist. We had wondered for all of the course of our son’s life why he was such a ‘High Need’ and anxious child, (and I certainly had concerns he might be Autistic but never voiced them). She encouraged us to see someone else about his behaviour after a very informal observation, with the clear caveat that she had not fully observed him and didn’t want to jump the gun by indicating a diagnosis too eagerly.
Diagnosis in the UK is usually made by a board of qualified professionals from different disciplines across the NHS. We were incredibly blessed in this way; most families simply don’t have this sort of early advice. The blessing we had in this early indication was outweighed somewhat by the very lengthy wait we had on the list to see CAMHS. In the end we were moved slightly quicker for reasons I’m not going to go into here. Long story, short, we were eventually given a clear ‘yes’ after 18 months of conflicting advice, ‘theories’, ‘gut feelings’, and opinions from a whole host of people in our lives from family, teachers, TA’s, GP’s, SENCOs, Social Workers, OT’s, Voluntary Organisation staff, Sleep Therapists and friends who all felt qualified to tell us that he either was or wasn’t “on the spectrum”. All was very conflicting and combined together, created a very lonely emotional roller coaster of a journey for our family over that time. We were a bit emotionally worn out to be honest.
The reason I tell you all this, is to create a picture of our journey for you. This is just one journey, but many families across the country go through this journey every year. Some smooth, some less so. We were helped by many people on it, and hindered quite frankly by some with the best intentions, but misdirected. This isn’t a journey to be taken lightly, but I am glad we did it, and with a bit of help and the right signposting and information, you can walk it with a degree of lightness of foot! -ish! It may not be right for you. You may not know till you dip a toe in. I can’t tell you what is best for you, only what I have learnt.
As a fairly intelligent, hard working, caring mother, what I wish I had known before we started the journey is listed in 10 points below. I really hope it will help you towards making an informed choice:
- The journey of diagnosis (or not) is for many, a pretty tiring grieving process. You can’t quite anticipate how you will feel at any point, go with it. Go easy on yourself. Not doing this may still result in you wondering for the next 40 years and effectively going through the same emotions but over many years so don’t think that by avoiding it you are avoiding the feelings. Sorry. If you’re not sure, start by talking to a GP. While they are not all that well informed or equipped, ours really surprised us by admitting his gaps in knowledge and exploring it with us.
- Prepare to ‘not know’ for a very long time even if you decide to pursue this. You may also go through several streams of diagnosis before you get a fit. Or go through them and never get a fit. Try to hold it lightly (impossible I know). It may be a very long ride.
- At some point you may need to tell your child about this journey, now or in the future. There is lots of great advice on how to do this, so don’t sweat it right now. Do decide if you want to tell them or not for now. Bear in mind that adolescence can be a harder time to process this, but it is not an impossible time. You may just need to process it yourself first. We used a book which I hope to blog about at some point.
- Family and Friends may take the news with a remarkable ‘spectrum’ of responses (whether you are exploring this diagnosis, or even have it). Their feelings, like yours are likely to change over time and they are entitled to that. They may grieve too. Some of our family were incredibly upset and took a while to get on board with the idea for their own varied reasons. Some took it with such an apparent blasé disinterest we weren’t quite sure if they cared. In hindsight, they all cared sincerely and are all supportive (we are fortunate). Everyone has their own understanding (or lack of) the condition, their own beliefs and experiences, and most people feel qualified to tell you that. They may feel they know your child well enough to tell you if they are or aren’t Autistic with great clarity. Prepare yourself to take other opinions with careful measure. They will come thick and fast if you ‘go public’ as we gradually did. Eleanor Roosevelt once said “What others think of me is none of my business”. This is written on my kitchen wall.
- Your child can come out of the CAMHS list at the very last minute if you want to hold off. They can’t join the list any quicker! Generally the wait on the NHS is unacceptably long. The government are cutting (in real terms) mental health spending for children considerably. Few people really care because it doesn’t affect them. Get ready to wait, if you think it will torment you, get on the list ASAP, you can always come off.
- Most people say things without really thinking through the impact of their throw away comments. I spent a lot of time during the ‘not knowing’ period of 18 months crying in public places because others were either very insensitive or incredibly generous and I didn’t know what to do with it. There was another customer who shouted “Control your child!” and promptly stormed out of a coffee shop when he was stimming because of the lighting and noise. Then the shop assistant in a craft shop who told me our visit was the highlight of the week after another shop had practically booted us out 5 minutes before for him touching everything tactile, which was simply sensory seeking. It’s OK to feel emotional about something so ‘big’. People are generally quite ignorant; it’s just our society.
- A diagnostic label doesn’t change your child, their character, strengths and weakness. It doesn’t make them Autistic. But choosing not to pursue a diagnosis doesn’t mean your child is then magically not Autistic too. It can give you access to specialist advice, courses and help. It can’t ‘fix’ your child, heal them or magically change their behaviour. They remain your child, but you can be helped to understand some of the causes of their behaviour (such as arm flapping, sensory seeking, anxiety, phobias, eating difficulties, sleep problems etc) and have some tools or medication (if you choose) to help them manage that. Some of these tools are accessible for you affordably with or without a diagnosis. I use sand timers and visuals a lot which I have bought on Ebay. Some are only by prescription through a specific specialist (Melatonin to help tell an autistic child’s body when to sleep). This has changed our lives after 5 years of no sleep. I suppose it’s a case of deciding if you want access to this help.
- A diagnosis is not a magic wand. Some days are harder than before which was disappointing at first. Some days are remarkably simple. Some days I state it publicly and proudly at a supermarket till if my son is flapping with his ear defenders on and knocks something over. Other days I leave a supermarket in embarrassment after a terrible time and silently cry to myself on the way home before I brave the kids with a smile. It is what it is. Be brave.
- Be ready to doubt yourself like a new parent all over again. You might doubt your understanding of your child. But now that we have a diagnosis we understand him better than ever because of the everything we’ve learnt. In some ways we got a remarkable insight and great (almost personalised) training on our sons behaviour that we will never have for our neuro typical daughter, so I am grateful. Many days I feel I am blagging it like all parents. Some days a sand timer works like magic and I want to find the person who suggested it and kiss them.
- Finally, remove all shame and guilt from the equation, they will only hold you back. Autism is not caused by parents or vaccines. It is a beautiful part of our son’s genetic makeup. He was formed with great intention and purpose in my womb and I believe I made something pretty great. It is hard I wont lie, but also quite funny and surprising as all parents journeys can be. Our son isn’t a savant, he will probably never be Temple Grandin, but we think he’s still awesome so shame about his Autism can only hold us all back, especially him. Do what you need to survive; microwave meals, ear defenders in public, ‘bribery’ (we officially renamed it ‘rewards’), help from friends and family, antidepressants, rest bite, carer passes at Legoland, disabled toilets (where you are in charge of the hand driers). This doesn’t make you a failure, it officially makes you ‘a human who knows their limits’ (which is actually a great strength as a parent!). No one in their right mind would go through the process of getting a diagnosis for ‘free stuff’ or ‘an excuse for their naughty child’ so don’t let those comments weight you down. If you decide to pursue a diagnosis, drop the guilt. If you decide not to, you always can in the future, so drop the guilt too.
All the best folks! I hope that rambling helped?
What was your experience with the waiting process for ASD, ADHD, ADD? Do you have any other tips on survival? I’d love to know.
If you want to explore this any further, the National Autistic Society is the perfect place to start with straight forward information. You can also call them.