Twins and Autism Spectrum Disorder – Interview With a Mum of Identical Twin Boys

Here’s the first of  two posts, and the subject is just a little bit close to my heart.

I’m both an autism spectrum disorder (ASD) mum and a multiples’ mum, and some of my favourite mums in the whole wide world are too.

In these posts, I’m interviewing mothers of twins where one or both of the twins is affected by an autism spectrum disorder.

This series is inspired by the research I did and the mums I talked to when preparing for a talk about ASD and multiples for the NSW AMBA (Australian Multiple Birth Association) State Seminar in Katoomba, referred to in this post.

The children we are discussing are very young and I’ve encouraged the mums not to use their real names; when they are older, they might thank us for this.

Jenny, mum of identical twins boys, Isaac and James.

Did you spot that your boys had developmental issues early?

I ignored some of the early signs because people would tell me twins were a real handful and also even doctors would tell me that identical twins speech can be up to a year behind.

This really enabled me to stick my head in the sand until they were almost 31/2 years old. My advice for other mums whose twins aren’t talking on time is to seek help as early as possible.

Did you spot issues in one twin first?

Yes Isaac first. Because I had no understanding of ASD before diagnosis I actually argued with my (long-suffering!) paediatrician over James’s initial diagnosis.

Had you joined your local AMBA group?

When the twins were about 22 months old I attended one play group session. They hadn’t been diagnosed. I spent the whole time running around after them as they had no sense of danger at all and there were steps and rocks to navigate.

They liked knocking things over.The mums were very welcoming though. I distinctly overheard them saying something like ” I don’t remember going through that stage” Ha, ha!

Their ASD behaviours were really beginning to show themselves and it was around this time that I started to hibernate at home until they were diagnosed. Although I went to that one playgroup session I didn’t end up joining the association.

Are the boys similar or different in their ASD symptoms?

Both boys are affected and have a diagnosis of ASD. They are identical twins but one twin is more affected than the other. There is quite a difference in their language and in the level of ASD behaviours they engage in.

James usually flies under the radar in public and even at preschool thanks to all the ABA (a form of intense early intervention). He is frequently indistinguishable from his peers (hurrah!)

Isaac is more obviously affected but still doing well. His expressive speech is up to two years behind in some areas whereas James’s is pretty age appropriate except for some social deficits.

I find Isaac tends to travel a similar developmental path to James but lags quite a way behind.

How do you manage!!??

In general…. For the first few years I didn’t really manage and after diagnosis and before beginning ABA I was emotionally and psychologically on the very edge.

I never got any treatment for myself as I was so busy trying to organise treatment for the boys.

Without my VERY hands on husband who has a much more stable and sensible disposition than myself I would hate to think where I would be. My husband works short hours.

Around the time of diagnosis my father-in-law died and my very lovely mother-in-law moved in and has been an immense source of help around the house and also as an emotional support.

This has enabled me to focus on the twins’ ABA therapy, knowing that my older son isn’t being neglected (my older son is 10 and “neuro-typical’).

The progress I saw once they started ABA helped me cope so much better and the therapists were great (I sometimes joke that should charge for the therapy they give me as well as for the boys!))

Financially we happened to be in the best position we had been in when diagnosis occured. Which is very lucky because all our savings have been used (and more). But without being in a position where we had relatively small mortgage we would have been ‘screwed’. We still had to borrow and access all of our super early to pay for two ABA programs.

When the boys go to school next year I will attempt some paid employment (after some recovery time!) to help pay for their on-going therapy needs.

What message would you pass on to other families of multiples affected by ASD?

Sorry to be biased but I am an ABA zealot. I would recommend ABA as intense as possible for as long as possible. Make sure the centre employs Board Certified Behaviour Analysts and is reputable.

BUT I know a lot of people literally cannot afford it. Ways I reduced cost was to train as a junior myself and do sessions, but with twins it’s so much harder.

My mother-in-law would mind one while I worked with the other. If I have one junior therapist working with one twin I would try and do a session with the other.

Play schedules or activity schedules using positive reinforcement were useful when I had both of them on my hands. But it was hard. Really hard, even with all the support.

Thank you Jenny for sharing some of your story with readers.

Life is bloody hard with any child with additional needs, harder still with twins.

Hope there is some R & R for you when the boys start school next year, and here’s to continuing progress for your boys.

All the best to Jenny and her family.

Do you have kids on the spectrum?

What’s your top tip for other families?