The Complications of More than One Autistic Child

When my son was just three years old he was formally diagnosed with autism. 16 months later his sister was formally diagnosed too. While both of them had the exact same diagnosis on paper their needs were totally different. 

One thrived on lining up, ordering, was verbal, had no learning disability, had a very limited diet but had very good fine motor skills and was starting to hold a pencil and form letters and number shapes. The other loved mess, disorder, had no speech, was extremely delayed in all areas of his development, ate everything (including non-edible items), still couldn’t hold a pencil or cutlery and gave no eye contact. 

Despite having the same diagnosis their needs were as far apart as possible. 

My children are now teenagers but over the last 9 years since they were both diagnosed having more than one autistic child has created a number of challenges that I often see in other families of autistic children too. 

The first is this: It can be hard for people to see the needs in both children. 

My son’s needs are incredibly obvious. He flaps and makes noises, he doesn’t speak at 13 and he isn’t yet ready for toilet training. He’s boisterous, has very little social awareness, needs 24-hour care and doesn’t cope with even the simplest of routine changes. Whenever I tell people he’s autistic they often nod or smile as he’s the epitome of what many see as high needs or severely autistic. In contrast, because his sister is verbal with no learning disability getting others to see and understand her needs has been an ongoing fight. There’s an assumption that one child is ‘more autistic’ when in fact that isn’t true at all. 

Second is this: Juggling the needs of more than one is tricky

I grew up with siblings and my own parents did a great job of trying to keep things as fair as possible for us all. But none of us had any particular high needs so meal times were all the same meal and expectations were similar for us all. That’s not what life is like now as a parent as I juggle the needs of two complex autistic young people to maintain a peaceful settled home. At one end I have a child who is only content if technology is on the highest volume possible, who has to always be moving and who loves nothing more than the same ten seconds of something on YouTube on repeat all day. Whilst in the same house my other child thrives on silence, people sitting calmly, and who is triggered greatly by hearing something nonstop on repeat! Every day is a balancing act and there are days I fail and someone is left upset. Cut yourself some slack as a parent if you have more than one autistic child because meeting everyone’s needs, including your own, is a holy grail that can often change at a moments notice! 

Thirdly: The paperwork is crazy!

From two lots of schools reports to disability benefits to reports from professionals, school meetings, phone calls, educational plans, targets, and assessments you’ll need a whole system to keep things organised and filed! Finding the time and energy to get everything filled in, send away or completed is exhausting and draining. Add in different schools, different professionals working with them and even different paediatricians and it’s enough to need your own PA some days! 

Fourthly: Don’t blame yourself 

For my family autism is most likely genetic as my husband is formally diagnosed too. Whilst this can bring answers it can also, for many, bring blame. Judgement from friends and the public can cause you to think it’s your parenting skills or something you did to cause it but this isn’t helpful to anyone. There is no blame and carrying guilt as a parent only makes things even harder. Leave others to think whatever they want and use your energy instead to be the best parent you can be. 

Every day I look at my children and hope I am doing the best for them that I can. I endeavour to see them both as the wonderful, unique, quirky individuals they are and give them the love and attention they both need in whatever way they need. It’s tricky and tiring but having more than one autistic child has taught me his vast spectrum is, how difficult we all are and how together we can learn respect patience and understanding that not only helps us at home but in the wider world too.

5 Ways to Make it Through this Christmas

We all have an image in our heads of what we think the perfect Christmas should look like. Full of traditions, happy and smiling children, no arguing – you know, very jolly, merry and bright.  The truth is I very much doubt that’s the case in any household, no matter the circumstances. But when you’re walking in our shoes, the pressure can be tenfold because we tend to be extra hard on ourselves.

Here are 5 ways to make it through the festive period.

  • Create your own traditions and do whatever works

This. All of this. Do whatever works for your family and create your own traditions. Maybe that’s an untraditional Christmas dinner. Maybe that’s the iPad featuring a lot throughout the day. Maybe that’s Christmas Day in the safety and reassurance of your own home. Go with it, do what works for you and don’t worry about what others are doing. It’s so important.

  • Be honest with family and friends

Yes, it would be nice if they just *got it* but let’s face it unless you’re walking a similar path, chances are you don’t. So let family and friends know what works for you. Accept help when offered. The ones that listen to and stick around to support you are the ones that matter.  

  • Don’t put pressure on yourself to go to festive events

Perhaps visiting Santa’s grotto isn’t something your child would enjoy, or a festive outdoor event would be too busy or loud for them. Don’t put pressure on yourself to do these things just because you feel you should. They don’t matter. What does is your sanity and your child’s happiness.

  • There is no shame in doing some things separately as a family instead of all together

I often take my daughter to things that I can’t take her brother to for a variety of reasons – access, sensory issues, their different needs. This means that sometimes we split up to do things as a family Yes, it isn’t the ideal scenario, but we must do what’s best for both of our children and think about both of their needs. And I don’t feel any shame for that (although of course there is always a side of mum guilt because it comes with the territory).

  • Be kind to yourself

BE KIND TO YOURSELF – I’m raising my voice for those of you at the back. This path we’re walking isn’t always easy and the journey is a long one. Try not to be too hard on yourself. You can only ever try your best. One step at a time.