21 of the top autism bloggers and online influences have come together to give advice to parents of recently diagnosed children.
I found it overwhelming when my boy was diagnosed at two and a half. When you are given a diagnosis it can be an emotional and often difficult experience for many parents.
It was difficult because I didn’t know much about autism (or at least hadn’t labelled what I did know as autism). It is totally normal to go through all sorts of different thoughts and feelings. It takes time adjusting to life on a slightly different path to the one you had planned.
I wanted to write a post for parents who have just had their child diagnosed. I know I needed good advice after my boy’s autism diagnosis. Who better to provide some support than other parents, autistic people and teachers. So I asked some of the top autism bloggers and online influencers to answer this question:
What is your one piece of advice to a parent of a recently diagnosed autistic child?
This is what they said:
Chris from Autistic Not Weird:
The first thing anyone learns about autism is that it’s “supposed to be a bad thing”, but I dispute that. Your child (as well as being exactly the same child as they were before the diagnosis), will have their own set of strengths and their own set of challenges.
Being autistic simply means having enough specific strengths and specific challenges to fall inside the diagnostic criteria. Underneath it all, they still have the very human trait of having their own personality, character, perspective- and of course, strengths and challenges.
So with this in mind, remember this important thing- there are people who will try to define your child by their weaknesses, and what they “can’t do”, or what they’re “supposed to struggle with”. Don’t be one of those people, and don’t listen to those who are. The more opportunities you find for your child to discover their strengths and play to those strengths, the more capable and happier your child will be as they grow older.
Steph from Steph’s Two Girls:
My first piece of advice to other autism parents is always to ‘find your tribe’ – speak with other parents locally who also have autistic children, join the support groups, sign up for information emails about what’s going on locally. Parents always have the most information to share but can also help you to feel less alone.
Ella from Purple Ella:
Don’t be afraid to advocate for your child. Don’t worry about being ‘that Mum’ or being perceived as needy or demanding. Prioritise your child’s needs and tune out any unhelpful comments, or opinions. Nobody else will fight for your child the way you will.
Miriam from Faith Mummy:
My one piece of advice would be to not compare your child with others. You know your child best and you know how to support them . Professionals know autism but they won’t know your child. Listen to your gut always.
Janine from Janine Booth
Accept your child for who s/he is. Do not try to cure them, work out what caused it, or make them behave like other kids. Don’t believe the scare stories or snake oil salespeople. S/he is not broken and does not need fixing. S/he needs your help and support to navigate a hostile society and the prejudices and barriers ahead.
Ann from Rainbows are too Beautiful:
Focus on your child. Parents can have a variety of reactions to the news that their child is autistic. I found it easy to become obsessed with anything and everything autism. But at the end of every day I tried (and still do try) to refocus on my gorgeous kids and all of them, not just what school they may need or services. Just them
My advice to parents would be to remember that the diagnosis of autism doesn’t change who their child is of take away all the wonderful things about them. They are still the same child that they were the day before they were officially diagnosed. There is one difference though, now hopefully more people will be able to understand them, support them and see the world from their point of view.
Kelly from It’s a Tink Thing:
My one piece of advice (only one?!?! Argh!) is ‘find your tribe’. Suddenly finding yourself with a child with a diagnosis of autism can feel like a really lonely place; old friends can fall by the wayside and it can be hard to find new ones. But, if you make the effort to get out and meet people, whether it’s at ‘autism friendly’ events for the kids, or parenting courses and so on, you’ll soon find a new tribe of friends who are your people. They just get it. It could even be an online group, but find people you can talk to, as you’ll need them!
Malin from Sensational Learning with Penguin:
It’s difficult to chose just ONE piece of advice, as all children and parents are different, and what I would have liked/needed to hear won’t be relevant to every other family. But one thing I’d like to say would be: Join your child in what they enjoy doing, and play along side them. Even if that means just rocking joyfully side to side in front of the tv, to start with.
It can be so easy to get caught up in trying to ’fix’ the things they can’t do, yet, and some professionals might emphasise working on modifying behaviour, like sitting still, maintaining eye contact etc.
I believe it’s more important to build a connection, and make your child feel ”safe, accepted and competent” to quote Bill Nason of Autism Discussion Page (and I’d advice everyone to check him out, too!). Join your child in the things they enjoy, try to see things the way they see them. Accept that they are different and might like to do things differently, follow their lead and find ways to work WITH their autistic traits rather than against them. Sometimes their competence can be well hidden, but that doesn’t mean it’s not there. Let the love you have for your child guide you, and you’ll be alright.
Nikki Saunders author of the Eddie Series
My advice would be, to find your support network. Charities, local support groups and parents who are in similar situations is key! I found other parents advice very reassuring that it ‘wasn’t just me’ who experienced a situation or a need. Other parents really did have to jump through hoops for diagnosis too!
I became an author because I never found the book we needed. Focus on your family and your child. When behaviours arise, it can be hard to forget the stares in public. Try to reframe that and look for the ‘cause’ rather than the ‘symptoms.’ For example, is the environment becoming too noisy? Overcrowded and over stimulating? Are the lights too bright? Did they sleep well the night before? Lastly remember you are not alone.
Alis from The Girl with the Curly Hair:
See the child as the individual they are. Change your expectations. Embrace diversity. They will flourish in their own way and you will develop a far more open mind from seeing life from a different perspective.
Sean from The Autism Dada:
Be patient and accept them for who they are…
O, and one other would be – You will get many comments and stares, but you know best for your child and don’t worry what others think.
There are so many things, it’s so difficult, to sum up one. From my perspective, the sooner you accept that your child thinks different then the sooner you can find things to enjoy together. Those that won’t accept it I believe struggle to truly bond with their children.
Alice from Living with a Jude:
Focus on what you and your child needs. Don’t worry about what anyone else thinks or says. No-body knows your situation, how your child feels or what you as a family need. So many people, including professionals, will give their opinions at one stage or another. Whilst it’s great to hear opinions, that’s all they are. You know what needs are important and don’t stop fighting until your child and your family have what you need.
Caroline from Autism Matters:
This is a difficult question because autism is so stigmatised which makes it natural for parents to be upset when they get an autism diagnosis for their child (even if they were seeking and wanting one) so my advice would be to be aware that a diagnosis is not a prognosis (it doesn’t tell you anything about what your child might be able to achieve in future).
One of my favourite quotes which seems very relevant here is:
“Diagnoses are often thought of as labels but they could also be considered as signposts. Signposts do something more than labels they help people find their way on a journey.” Dr Ruth Baker
The important thing is to see your child as a unique individual who needs to be understood within the framework of autism, your instincts are likely to be better than generalised advice about autism, so I’d say trust these and speak with other parents.
Helen from Autism All Stars:
Always remember that first and foremost your child is still your child, and hasn’t suddenly become someone else just because their autism has been diagnosed. Autism is unlike any other condition on the planet, and affects every child differently simply because every child is different. I have four children on the spectrum and each one is totally unique even though they share so many autistic traits.
Attitudes towards autism have changed so much over the past few years, and today there really are no limits to what your child might achieve, so keep focussing on the positive, and get proactive about helping your child become the best adult version of themselves that they can.
Use the diagnosis as a guide, not as something that’s set in stone, and don’t fall for the ‘to label is to limit’ misconception because believe me, autistic people don’t see limits, that’s something other people do.
With or without a diagnosis, all good parenting comes down to this: being there to work through the challenges together whenever they arise; celebrating the milestones, no matter how small, and accepting your child for who they are. Who they are, incidentally, is SO much more than any diagnosis can describe, and the best thing about parenting an autistic child is learning to appreciate them in all their unique, diverse glory.
Shannon from Thinking Persons Guide to Autism:
I wish I’d known then what I know now: that I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what people assumed autism made him. I also wish I’d been able to recognize and dismiss all that debilitating ignorance, fear, and confusion.
Paul from Paul Isaac’s Blog:
I would say regardless of what label (autism is an adjective a describing word) always remember your child is a person.
Reneé from Mummy Tries:
My biggest piece of advice for a parent of a newly diagnosed autistic child is simply trust your own instincts. It can feel like we’re discouraged to use our greatest asset (gut instincts) every step of the way, pretty much from the day we become parents.
Inevitably the autism diagnosis process will involve coming against people who undermine what we know deep down, and it’s so important to not be railroaded by them. Best of luck, and lots of love.
Terry from Autism Together:
To work out what areas of support your child needs most help with, to try to view this from your child’s perspective, then one small step at a time, think about how you might help, or enlist help from others.
Rachel from Asperger’s My Mum and Me:
If I could give anyone any advice about living with a child who has Asperger’s it would be to step away from all forms of technology and pay attention. It is important to get inside the mind of a child with HFASD to understand what makes them tick.
If that is computer games you must play the computer games. If your child likes reading, please take time out from your day and read with them!! If has an interest in (as in Alfies case) Freddie Mercury then show an interest in Freddie Mercury. Make it your mission to learn about whatever his/her interest is because this is the only way your HFASD child will open up to you.
Steph from Autism Spectrum Teacher:
The autistic brain has a fascinating way of viewing the world. Try to see it from their perspective. Notice how they respond and behave to different situations. Autistic children will process sensory stimuli very differently. They may be exceptionally sensitive, or on the other hand, very under-sensitive or not even register specific sensory stimulation.
Sensory stimulation refers to all types of human senses including touch, smell, taste, sound, vision, as well as our sense of balance, movement and awareness of our body position.
Notice how your child reacts to the sensory stimuli around them. Do they try to avoid it, for example; blocking out sound by holding their ears, not want to enter a specific room, refuse certain foods or only want to wear certain clothing? This will indicate hyper-sensitivity (very sensitive) to certain sensory input and we should therefore try to pin-point what it could be. Is it the sound of an electronic item? Is it the smell of a perfume? Is it the texture of food? Is it the feeling of a certain type of clothing? This will help you to decide how to support the child to feel more comfortable in their environment.
Examples of hypo-sensitivity (under-sensitive) may be; excessively touching certain materials, regular movement of the body such as jumping up and down, turning the volume loud on a speaker. They are therefore seeking this sensory input.
If they are seeking sensory input, try to give it to them in a safe and well-planned way. This will ensure they receive the sensory input and may help to avoid unsafe sensory seeking. For example, a bag of materials they like to touch given at certain times in the day, jumping up and down with you before going on the school bus or time to listen to music with headphones (with a safe volume level!)
As much as possible, observe and understand what they are telling you with their behaviour and reactions, to the constant and often overwhelming sensory stimulation around them. Adapting the environment and supporting a child to manage sensory input safely, can really help them feel happy and comfortable, having a big, positive impact on their wellbeing, learning and behaviour.
For those that have read this far you get a bonus extra of my advice:
Jade from The Autism Page
You don’t need to be an autism expert overnight, it takes time to get your head around any new information.
Also surround yourself with supportive friends.
I hope you have found something helpful in the advice above – I know I have. I would love to hear what you think or if you have some advice to add let us know in the comments.
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