What does a parent raising an Autistic child need the most.
Yes, we know Autism awareness month was back in April, but parents of an autistic child will all tell you that Autism isn’t exclusive to one month a year and then suddenly disappears for the remaining eleven months.
Four years ago I become a mum for the second time, to my eldest son. Before starting to question Autism, I knew my role as a parent this time around was different. Even from a newborn, meeting his needs was far more intense and came with a bigger dash of urgency. Everyone who is blessed to meet my eldest son comments on his infectious smile and big green soulful eyes that tell a thousand stories, which you can quickly lose yourself into his beautiful little World. We have learnt the hard reality that society is not always prepared to accept and understand what life is like through the eyes of an Autistic child. The majority of today's society remains misunderstood and has a long way to catch up before acceptance and understanding are created in the “neurotypical” society we live in.
You do hit a point when you realise there are three types of people out there:
People who really want to help, but don’t know how to.
My favourite is the folk who have first-hand experience of what it’s like to parent an Autistic child, who can relate to the challenges and want to give us parents the guidance and support we need.
The ones who have no concept of the reality of parenting and living with an autistic child. I was shocked to learn that some (thankfully not all) professionals who are highly trained in ASD can fall into this group, which is very disappointing and stressful to many families who entrust them with their children.
Then there’s the least favourite, the group that doesn’t believe in Autism, often they come with high opinions of how we should be parenting, telling us how they can do a better job! Believing everyone is on the Autism spectrum and it’s completely normal to have traits, you could say it’s a very blinkered outlook and it's no help to anyone.
In this blog, we will discuss the various challenges parents with Autistic children face, and what support society can offer them from the overwhelm and carer burnout.
If you want to read about my experience of raising an Autistic child click here.
How to support a parent of an Autistic child.
Just like every other individual, no two autistic people have the same characteristics. This is why we can’t jump to conclusions and expect a one-size-fits-all perception. Symptoms vary from person to person and begin in early childhood.
There are so many ways to support parents of Autistic children. Many people want to know how to provide support for additional needs families but are unsure how to go about it, which is why many people, unfortunately, remain silent.
From my own experience of raising an ASD child and speaking to South Wales families who have similar experiences it's clear there is a need for support.
We have come together to create 25 ways society can support families who have Autistic children:
1. Keep inviting.
Turning up is sometimes just not possible, there is so much for a parent of an autistic child to factor in, and the majority will opt for cancelling plans or not even accepting the invitation in the first place. Please don’t take it personally, it’s not you, life can become overwhelming when raising an Autistic child, they need to factor in so much.
Listed below is a handful of reasons why your invite might get rejected:
Worry about how people will feel about your child becoming overwhelmed.
Not having enough details to plan.
The event is not ASD-friendly.
They can’t remember when they slept properly last, and feel unsafe to drive or/and physically and mentally drained.
A meltdown happened just before leaving the house.
It will break the routine of introducing something new.
Childcare letting you down or not being able to find childcare which caters for ASD.
Keep the invitations coming, they really do mean much more than you can imagine. And who knows, life might get less overwhelming or they gain the support to allow them to accept the invitation.
2. Keep trying to engage.
Like us, Autistic children get lonely and want to be acknowledged, even when they appear to be aloof. You’ve tried your very hardest to grab their attention, and you probably feel like you are being ignored, but please don’t give up. It can be down to just finding the right way to engage or say the right thing, and then out of nowhere, they are captivated by you.
It’s magic to watch an autistic child interact, it’s a parent's dream come true.
3. Educate your children about Autism.
Show your children that all children are different. Help them understand that some need extra time to get to know you, and support when they struggle in certain situations or places.
The hope is, society will become inclusive to all, and learn how to create friendships with every child regardless of how big or small the differences are.
4. Share with us.
We can’t get enough of hearing about Autistic children who have smashed their milestones. It shows hope is ahead of us and the progress of achieving a goal, be it big or small.
5. Ask questions.
Making time to understand the child’s needs, and what it’s like to have an Autustic child will show you care.
Parents love talking about their children, and parents of Autistic children are no different, they are proud and want to share this with you.
Here are some questions to ask:
What sensory challenges does your son or daughter have?
How can I make your son or daughter more comfortable?
What adjustments can I make to help?
6. Make adjustments.
There is an abundance of resources to help and educate us on Autism, and it really does make a difference when you come fully prepared to be inclusive.
Sometimes it doesn’t take a lot, a little adjustment here and there, and it can turn things around to be a positive experience for an autistic child. It can mean the difference between your friend being able to stay when you get together or having to leave early with a distressed child.
Here are just a few things to consider:
Be on hand to help out.
Pack a goody bag filled with distractions, such as spinners, balloons and stretchy toys can be great diversions.
Provide a safe space away.
Offer them to come early before it gets busy.
Ask them if there is anywhere they would prefer to meet. because some places are just not possible to visit.
7. Create safe spaces.
Don't change the child, change the environment - a safe space can make all the difference. Here are some simple changes you can do to help -
Dimming the lights.
Keeping the volume low.
Eradicate strong smells.
Having sensory options at hand.
Options for solo and one-to-one play.
Games which have an endpoint.
8. Financial Assistance
How to support an autistic child is a question parents often ask themselves, and it can be a struggle without the professional guidance pointing them in the right direction.
We are very lucky in the UK to have the NHS which covers therapies and diagnosis. Parents can also apply for grants, funding and Disability Living Allowance to help towards the additional cost Autism can incur, such as:
Specialist car seat.
Mobility pushchair or buggy.
Communication aids.
Play therapy.
Sleep therapy.
Early intervention services
Resources and training/workshops.
Water and heating bills.
9. Awareness.
Invisible to most people, so creating awareness is key to breaking down the challenges and battles children with Autism faces, so they can be understood and respected.
April is Autism awareness month and a great start to show your support.
10. Don't be offended.
The world is seen differently for an Autistic child, with an oversensitive sensory system, they easily get overwhelmed, leading to signature behaviours such as tantrums, anxiety and social withdrawal.
They don't always understand social situations, often miss social cues, might prefer not to give eye contact, fidget, and can come across as if they're in their own little world - don’t be offended, they are not being rude! This is the self-regulating or hyper-focusing, whilst they are trying to make sense of a world which they can’t always make sense of.
The questions I would like you to ask yourself is…
Do you need eye contact to listen?
Do you need to sit still and not fidget to listen?
Do you need to show you are listening to a conversation by nodding and making all the right noises?
The answer will be no, you don’t!
Embrace their world instead of trying to change them to fit in with society.
11. It’s rude to stare!
Nobody likes being watched, and it’s certainly unwelcome when coupled with ill-judged remarks.
Parenting is hard work, being kind, having you by their side to fend off unwanted interest, or offer to calm explanations will make all the difference.
12. Shut that door!
It’s common for Autistic Children to run off or wander away from caregivers or unsecure locations. This can be a very worrying and traumatic situation for a child and caregivers, especially when most are unable to communicate their names let alone their addresses.
The majority of Autistic children have no sense of danger, which leaves them open to ending up in dangerous places like busy roads or bodies of water.
Here are some things you can help parents keep their children safe:
Close the park gate, this is pretty huge given most parks are on the roadside. Even if you're stood by the gate, children can be quick and forceful to slip out without you knowing. This also goes for soft play.
Regardless of a child’s age, secure your home. Autistic children can have Houdini's powers. When checking your home, visualise it through their eyes to see ways they may find to escape. Shut and lock doors that lead outside. Consider putting alarms on doors to alert you if a door has been opened.
13. Be a friend.
Encourage your friend to seek out whatever support is on offer from social and educational services. When parents and services work together, it can lighten the load, reduce some of the stress and give back some time.
14. Autism support groups!
Support groups can be a great way to ease the overwhelm that can be experienced when entering the world of special needs. As well as getting to know other parents, local autism groups can also provide expert advice from guest speakers, therapies, ASD activities, resources or services that might benefit an autistic individual.
Not all communities run face-to-face Autism support groups, and juggling a busy family can mean time is limited, so attending groups in person isn't always possible. Online support groups is a fantastic alternative to providing a virtual network of support who need a little flexibility.
Sometimes parents need a little help to find the right support group, or they may need you to accompany them to initial meetings.
To give you a helping hand to get started, here are some wonderful Autism support groups:
15. Check-in.
Asking for help is hard, especially when looking after a child with additional needs around the clock. They may appear like they have it all together on the surface, but the reality can be a different story.
You probably can't remember when you saw them last, and I can guarantee neither will they. Be a friend, reach out to them and ask them how can you make it possible to catch up. Making time to accommodate them can be a huge tonic.
16. Never assume.
Autistic children are NOT “stupid”!
I wish I didn’t need to write this one, but some people need that extra little nudge to realise there is so much more behind the diagnosis.
Get to know the child and find out what they excel in, which can be:
Finding patterns.
Seeing irregularities.
long-term memory.
Solving complex problems
17 Respite.
Caring for a loved one can be a highly demanding and challenging responsibility. Occasional respite care can make a world of difference, allowing some well-deserved me time to recharge the batteries or invest in other loved ones.
Encourage your friend to seek out whatever support is on offer to lighten the load, reduce some of the stress and give back some time.
They will feel apprehensive about the idea of a stranger taking over, and a lot of work to explore options will need to take place to ensure the service provider offers the correct level of care. Supporting them on this journey can lighten the load.
18. Listen.
Unless asked, Never compare!
Listen to the challenges they’re facing, they often feel like they’re carrying the weight of the world on their shoulders.
I got chatting to a mum who also has a son diagnosed with Autism and she explained that bad days can be like “fighting fire without means to water”, she couldn’t have been any closer to the truth.
When a parent of an autistic child opens up and shares what a typical day is like for them, it can be upsetting to hear what they are dealing with. You might not have the answers to help what they are going through, but showing up and listening so they can unload is something they will be forever grateful for.
19. Celebrate with us.
Reaching developmental milestones for a child with autism doesn’t always happen according to the book, it can take a lot longer, happen in a different order, and they might even skip a few by showing us their superpowers.
Not seeing your child progress in a conventional way is a huge worry for a parent, especially when it’s things we take for granted. We can easily become hard on ourselves and start questioning what we could have done better. Having someone bring our focus back on the successes and the goals reached is really important.
20. Nap time.
Sleep deprivation is common for autistic children, and their parents equally suffer physically, emotionally and mentally from sleepless nights.
Offer to take over supervising the children or doing some of the house chores so they can get some well-deserved rest, they will be forever grateful.
21. Don’t Judge
Parenting is hard!
It’s even harder being a parent to a child pre-diagnosis or with an autism diagnosis.
Never judge how a parent of an autistic child is parenting, they are likely struggling and hoping they can create blockers to avoid any overwhelm to keep their autistic child safe. They have learnt that sometimes things have got to be done a certain way.
22. Maintain Confidentiality
One rule of friendships should go without saying: Never break a friend’s confidence.
Parents sometimes will choose to confide in a friend, so they can let go of some of their troubles. However, that doesn’t give permission for someone to spread private information about a parent’s struggles with their autistic child.
Offering support by keeping things confidential shows you respect both the parent’s and the child’s right to privacy.
A lifetime with Autism
23. One step at a time.
One thing I’ve quickly come to terms with as a mum of a autistic child is, things can quickly stack up.
To avoid stress, focus on dealing with today and not waste energy on the what if’s. Energy spent worrying about the future will drain the energy needed for today.
24. Understand. Often Autistic Children will be seen to self-soothe by carrying out repetitive self-stimulatory behaviours. Self-soothing can help calm and deal with stressful situations or stimulate their senses. Don’t stop this from happening, they can also be sensory pleasing, instead, show them you understand by letting them be themselves. Here are some to look out for:
Self-stimulatory behaviours, such as rocking and flapping their hands.
Hyperfocus on a particular object or interest.
Solo playing and not joining in.
Daydreaming.
25. Stay Calm.
When my child is having a meltdown, please stay calm.
Meltdowns happen when an Autistic child becomes overwhelmed by their surroundings. A sense of calm is needed to restore a child’s feeling of control and end the meltdown.
During a meltdown, parents will likely be busy with the child, trying calming techniques to help speed up the recovery time from the overwhelm experienced.
Resist the temptation of stepping in to help, instead make the immediate area as peaceful as possible. You can do this by checking the area for anything which could cause sensory distress, such as:
Noise, Music can be turned down or an alarm can be silenced.
Lights. They can be dimmed or flashing lights can be turned off.
Crowds. People can be gently asked to move.
26. Advocate
Parents with addition needs children face significant stigma and can encounter discrimination in everyday life.
Help parents by speaking up for them and their children by:
Advocacy
Support
Increasing understanding of autism.
Show acceptance of individuals with autism
Help with autism research
Improve interventions for Autism.
It is a gesture that won’t be forgotten.
To conclude
Every Autistic child has their own challenges, and that's why it's so important to take the time to get to know our child to support them. Trying to be the best parent whilst learning a whole new world, with next to no sleep is overwhelming. It can leave you feeling burnt out and confused about how to ask for help.
The majority of parents who are going through the process of diagnosis or have received the diagnosis will not even realise they need any of the suggestions offered above.
Learning to accept help opens doors, and makes all the hard stuff easier.
Remember:
We want our children to be accepted, which is why surrounding ourselves with people who make time to engage and understand our children makes a big difference.
Understanding Autism makes such a huge difference.
Do you think anything is missing from the above?
Comment below so I can continue to update the blog.
Enjoyed reading the blog, you might like to read the blogs below:
Bridgend Family Photographer shares what parenting a Autistic child is like.
About the Bridgend, South Wales Maternity Newborn and Family Photographer Blog Author:
With nearly two decades teaching and working with neurodiverse children and young adults. Adele offers inclusive family photography sessions all year round to her clients, where each session is bespoke to the family's needs and any individual requirements they may have.
Within only 5 minutes walk to the most beautiful coastline in South Wales, it's the perfect setting, with clients travelling from Swansea, Bridgend, Cardiff, Llanelli, Port Talbot, Newport, Neath, Pyle, Llantrisant, Carmarthenshire, and all over South Wales.
If you would like to know about my all year round bespoke photoshoot sessions and discuss your additional requirements, then please do not hesitate to get in touch:
Adele Morris Photography
Specialist Maternity, Newborn, baby, and Family studio photographer.
Serving Swansea, Bridgend, Cardiff, Llanelli, Port Talbot, Newport, Neath, Pyle, Llantrisant, Carmarthenshire, Porthcawl, Cowbridge, Barry, Ogmore, Vale, and all over South Wales.
Comments