Hi, my name is Daniel, together with my wife Rosie we proudly parent two amazing, but very different boys who are 5 and 3 years old. Our 5 year old son Hayden is autistic, I want to tell you about parenting my autistic child. To let you know what has and hasn’t been helpful for us as a family. Hopefully to provide some encouragement and inspiration if you are seeing early signs and also to share some resources and advice I wish I’d had at the beginning of our journey.
When we envisage our future family, I don’t think many people consider how they would cope with a neurodivergent child. It is naturally a scary thought. You question if you have what it takes, are you up to it? For us as parents we had a complete lack of knowledge and experience around autism, which fuelled our fears.
Firstly, I would like to say I am no expert, there is a saying “If you’ve met one autistic person, you’ve met one autistic person.” This is so true, autistics are all individuals with very different strengths and difficulties, I can only talk about my personal experiences parenting my autistic child.
Early Signs That We Were Parenting An Autistic Child
Hayden was our first child and we didn’t have many friends with young children. So we never compared him with other children of his age. Every time he hit a milestone we cheered him on, in awe of how amazing he was. We didn’t notice that he wasn’t hitting milestones at the typical rate. He was a loving, funny and very active toddler, the only indicator we noticed was that he wasn’t really talking.
As we didn’t have anyone to compare him to we didn’t worry too much. Trusting that children will do things when they are ready. Plus it was obvious he understood what we were saying to him. He was and is a very bright little boy. Rosie asked the Health Visitor at Hayden’s 2 year check whether we should be concerned about his lack of speech. The Health Visitor referred us to the Speech and Language Service. So our journey of navigating the NHS – its long, waiting lists and extensive, complicated forms began. We waited over 6 months to be seen by the Speech and Language Service.
Whilst we were waiting we started to research autism as some other indicators were emerging. Hayden flapped his hands, especially when he was mesmerised by spinning objects. The Speech and Language Therapist referred him to their Paediatrician. This was the point when we really began to accept that our son was autistic. Hayden was put on the list for the Autism Assessment (ADOS). This was another huge waiting list – 2 years!
Learning More About Autism
Hayden was growing and developing, in his own individual way. We knew we had to learn everything we could to support our beautiful, little boy. This was a difficult time for us emotionally, especially as we had welcomed our second son Bailey into the family but we pulled together and grew stronger as a couple and a family. We started to research online and read books to try to understand what being autistic meant for Hayden and for us all.
Finding Instagram pages like @Neurodivergent_lou and the hashtag #actuallyautistic led us to some really great information and support. We also found some great children’s books that really helped:
The children’s TV Program Pablo has also been a great source of information.
It was a real eye opener for us when we reached out to autistic adults, we found FaceBook groups run by autistics, it really helped us to listen to their lived experiences. This was the first time we felt like anyone truly understood Hayden. We could tell immediately this was where he fitted in. We have gained valuable knowledge from these groups and now it is the only place we look to for advice.
I must add a note of caution here, there is a lot of misinformation out there. We tried a few parent support groups but didn’t find them useful to us, we were uncomfortable when some parents described their children in unkind/unhelpful ways that we couldn’t relate to and therefore felt we didn’t fit in.
Getting the Official Diagnosis
Now we know so much more about autism, it is very obvious to us Hayden is autistic. He did show many of the early signs, but we lacked experience of neurodiversity. We believed that all children developed in their own individual way and in their own time. This was not a negative as it meant we did not pressure him to do things in any particular way. In fact, we know how important this is for autistic children.
He is still mesmerised by spinning objects, he doesn’t make eye contact with strangers. Only with family on his own terms. He is very happy playing by himself, he relies on a routine and he has delayed speech. He has to run around and flap his hands and jump when he is happy. All of these things we love, but have to be realistic about the dangers. Especially when he smashes into things and has no sense of risk or danger.
Hayden is mostly hyposensitive (rather than hypersensitive) which means he is sensory seeking and will repeat potentially harmful behaviours like hitting his head or rubbing his eyes and has to be gently guided away from doing this. We rejoice in his kindness and empathy, he’s loving and funny. He loves to laugh and is truly a beautiful little human. Now we know so much more about autism we know these are all absolutely traits of autistics, but often not the ones shared or celebrated.
When we finally got the official autism diagnosis in 2021 it was no shock to us and we celebrated the occasion with cake!
Seeking Support For Our Autistic Child
It was vitally important that we started our search for knowledge and support before the official diagnosis as we were then prepared for him attending Nursery and School. We did a lot of research into local education provisions to ensure Hayden is understood and valued for the individual he is. We took a long time doing this research to ensure his nursery/school are inclusive and will value him for who he is.
It was also vital that we applied for and secured an EHCP (Educational Health Care Plan) for school to ensure Hayden has one to one support. This is an incredibly long and detailed process and we had to provide extensive evidence from supporting health professionals. At times it felt overwhelming as we had to fight our Local Authority to get the right level of support for Hayden, but it has been so worth it. We accessed support from FaceBook groups and a website called, “Ipsea” to help us through this process.
We first started looking for support though Charities, we are Essex based and reached out to Families in Focus – who helped us apply for DLA (Disability Living Allowance) and Carer’s Allowance. These benefits were essential to us as a family. As Hayden’s additional needs restricted our availability to work. Especially for my wife Rosie. We will not allow Hayden to be in a position where he is unsettled or unable to cope.
There are different charities in different areas, but you need to be prepared to pick and choose the ones that will be helpful. As all children with additional needs are different you might need to look around to find the right support.
The Things You Need For Parenting An Autistic Child
It is really important to:
- Find a good Speech and Language therapist. Speech isn’t always the goal, find a therapist who will look into different methods of communication.
- Find a great Occupational Therapist (OT). (but, always be aware of ABA (Applied Behaviour Analysis) techniques being used, which are used to try to teach autistic children to act in a neurotypical way. Many autistic adults report they have Post Traumatic Stress Disorder (PTSD) from being subjected to ABA as a child. It can be quite extreme in it’s methods, denying children what they need, until they comply.)
- Learn about and support your child’s sensory needs. Provide sensory support e.g. sensory room, bouncy balls, fidgets, trampoline, swing, head phones. Limit social interaction, give access to screen time, listen to your child, help them find ways to regulate. Never stop them from stimming (self-stimulating behaviour) unless it is dangerous.
- Keep a supportive circle. We are very lucky to have supportive family and friends. But we keep our circle small and if anyone treated Hayden unfairly we would have no problem in removing them from our lives. Our children’s mental health and self worth is the most important thing to us.
Finding Fun Things To Do!
Like all children, Hayden loves fun! He loves days out, and spending time as a family. Especially the Theme Park rides as he is such a sensory seeker. And we love having these experiences together. These days out can take a little more planning when you’re parenting an autistic child, so do some research!
We discovered that many attractions like Theme Parks, Farms, Aquariums, offer 1 free carer’s ticket for family outings. Make sure you take a look at websites before you go to see what’s on offer. We also look at what accommodations different places offer, Merlin are really good. They offer a Ride Access Pass to people who cannot queue because of their disability. This has been a huge help for us to ensure Hayden can have a fun day without the stress of having to stand in a long queue, which he could not cope with.
My Advice To Others Parenting Their Autistic Child
You need to completely accept your child for who they are and learn to understand them, tell them they are autistic, it is a different neurotype and nothing to be ashamed of. Read them books about autism and books with autistic characters, show them great autistic role models. There are plenty of them. Be an advocate for your child, don’t let other people’s opinions effect you, be prepared to stand up for your child’s needs. Take an interest in their special interests.
To support Hayden we now know to give him lots of preparation and notice of change, we provide visuals to support him to recognise when an activity is ending and where possible let things come to a natural end. We don’t stress over food, he eats what he likes and we put no pressure on him, but always give him the option to try new things. We currently have and, I think will always, stick to a routine. This is vital for Hayden so he doesn’t experience additional anxiety about what is going to happen.
So What Is The Truth About Parenting My Autistic Child?
Writing this down now, I realised how much we have achieved and how much we have grown in knowledge and strength. The truth about parenting my autistic child is that it may be a completely different experience for you parenting your autistic child. Neurodivergence and autism looks different for every individual. But I hope that my experience can help you see that parenting an autistic child is a beautiful and rewarding experience. It can be scary, but there is so much support out there if you know where to look.
We recognise that we are still relatively early on in our journey with Hayden, he is still only 5. We’re not naïve to the challenges he will face in life being an Autistic person and a person of colour. But we cannot let that fear consume us and destroy our present. We need to build him up to be the strongest he can be and prepare him for success.
If you take only one thing from reading this please let it be that autism is a different neurotype, a different way of thinking, not a condition or illness that needs a cure. We need to elevate autistic voices and be ready to listen, learn and accept, not to be defensive. We are fed so much harmful information, we can only do better when we know better.
Looking For More?
If you enjoyed this post, and want more support for your parenting journey use our search feature to find more blogs and chats that might help you. We were also pleased to have the amazing Richard Whitehead MBE as a guest on our podcast, Richard shares his journey in parenting his autistic daughter – listen below!
1 Comment