When thinking of posts to write about autism this month, I tried to think of the things that are common to all parents of all ASD children. It’s true, we all have our varied experiences and these can be so totally different, just as life on the spectrum can be. I considered doing a post about things not to say to an autism parent but a lot of people have been there before and done a good job of that. I also like to keep things positive, as you can see from the post I did about “5 Amazing Things About Having A Child With Autism“.
So this month I’m talking about something we all have in common; fear. Just as our experiences are all different, so are our fears but I would wager that not one of us doesn’t have at least one or two listed in this series of posts.
It’s perhaps ironic that, just like autistic children themselves, parents of autistic children often become apprehensive about change. Many things about a successful day-to-day life with a child on the spectrum rely strongly on easily predictable, repeatable scenarios. That can be routines within the home, outside dealing with other personal interaction, school, etc. Any disruption, however minor it may appear, can often derail the whole thing that you and your child work so hard to maintain.
Getting solid routines implemented can be an uphill struggle, especially if your child isn’t on-board straight away, so when those routines are bedded-in they become essential to keeping things running. In our house we’re not driven by visual aids to regulate our activity but we do make sure that things that involved Morgan happen the same way every time. School drop off, school pick up, bathtime frequency, bedtime routine, these things always happen the same way and it’s for good reason.
Autistic children (and adults too) take comfort in the familiar. Living life within a set of pre-established parameters is reassuring as it doesn’t require them to immediately interpret information to deal with a situation. Autistic people often require more processing time to figure out what to do in any given situation. Engaging with familiar situations enables them to fall back on pre-established patterns or templates that they’ve developed through a lot of hard work. Those situations are comfortable and dependable. This is why many autistic adults are able to function very successfully in interactions with clear rules and boundaries such as financial transactions, shopping, etc.
If an autistic person is presented with an unpredictable situation, those templates become useless and the person is required to think quickly on the spot. Their need for processing time may also not be respected in that situation and they can quickly become very anxious and upset. That’s why, as a family, we respect the patterns that Morgan is comfortable with and use them to help him stay calm and focused.
Sadly, we can’t control all the routines in his life, so inevitable something will change and it’s our job to help him deal with those changes. This has happened a few times at school, with morning routine changes being implemented to encourage him to adopt a more typical routine to his peers (he originally went in earlier and through a different door). This is well-intentioned but we’re only keen to implement changes that benefit Morgan, not to normalise him for the sake of it.
We’ve also learned our own lessons about the dangers of changing routines. Once we decided to do story time downstairs instead of in bed as usual. This ended up throwing the whole routine out of whack and Morgan got very upset. It wasn’t the addition of the story earlier that caused the distress but when he realised that the usual story in bed wouldn’t happen, the template was broken and it affected him a lot. We eventually got Morgan to bed a lot later than usual and learned that changes have to come gradually and on Morgan’s terms.
Talking of sleep (something I do quite a lot here) we parents also dread changes to the child’s sleep patterns. In many ways this is one change that is instigated by the child and therefore mostly disruptive to the parents themselves although the resulting sleep deprivation is detrimental all around.
Autistic children don’t have particularly spectacular ‘circadian rhythms’; the natural timing by which the body decides when to sleep and when to wake up. This can result in them waking up at bizarre times of the night and not getting back to bed again until a long time later. This might settle into a routine for a while but it is incredibly prone to change. Our son gets up at all hours and ends up sitting in our bed watching tv.
This frequently shifting night routine has a big impact on our own ability to get some sleep but we do our best to fix it with coffee and huge doses of loving patience. The worst side-effect is that on those nights that Morgan doesn’t resettle himself, it really can impair his ability to function well the next day.
This is one that we’ve had very little experience of, but I wanted to make sure it was represented because it forms part of many autism families’ experience. People with autism can have very changeable sets of capabilities. Something that comes easily for a while may one day become difficult. An autistic child that speaks may one day stop and that hard work will start again to adapt to those changes. This is called ‘regression’ and can be devastating when it happens. It is also common enough that it is actually it’s own ‘sub-type’ of ASD known as ‘regressive autism’ or ‘autism with regression. There’s a good overview here.
We’re lucky that Morgan has never regressed but it remains a concern. Our experience of our son’s changing capabilities has always been mild surprise at some new thing we didn’t know he could do and suddenly shows off to us. This has included speaking, writing his own name, reading and using his iPad to hijack the in-car Spotify playlist.
This is a tough one to get used to, mainly because it’s totally out of your control. Throughout the formative years of their lives, your child will likely come into contact with teachers, teaching assistants, doctors, therapists, sencos, etc. These people all have involvement in important parts of your child’s life as they develop and most of these people will need to gain your child’s trust in order to develop a situation that is productive and comfortable. Children on the spectrum do not hand out that trust quickly or easily. Just as with routines, autistic children respond best to people and places that are familiar.
They learn to trust people over the course of the relationship and often these people will not have meaningful discussions or even eye contact from them until they have gradually earned their trust and become a familiar person that can be relied upon. Morgan has made some great relationships with some of the adults that have been involved in his care and development. Unfortunately, a fair few of those people have moved on.
It’s sad that these people that Morgan relies upon so often move on or move away and he deals with it as well as can be expected but it’s very hard for him to lose the people he’s put so much trust into. It’s inevitable that this happens of course. People have careers that take them off to other places of employment, people change jobs, etc. But every time someone gets replaced, that hard work begins all over again and eventually there develops a risk that he will stop engaging with new people because he fears losing them.
One of the big changes we deal with is at school. Each year Morgan has developed close relationships with his teachers and then at the end of that year he moves to a different class and all those familiar faces are replaced with new ones. This year he’s actually had two teachers and a new TA which took some time to adjust to. Next year he’s going to have an even harder time as he will be changing schools and all those friendly background and secondary figures will be lost as well as the familiar surrounding.
This is my over-simplified way of describing the constantly shifting network of benefits, allowances, council processes, national government initiatives, school placements and funding changes that impact us in one way or another. All these things form the foundation of our support system and it’s a foundation that is constantly changing.
As a disabled child Morgan has a certain amount of entitlement to funds that help us provide as ‘normal’ an experience for him as possible. This is essential but it’s never something you can grow complacent about. As Morgan grows, the help he’s entitled to will change, especially when he becomes an adult. There seems to be an overall bad feeling in the UK at the moment over the treatment of disabled people, especially with regard to the government’s treatment of disabled adults and the removal of their support in a cynical attempt to drive them back into the workplace. This approach may change over the next few years but we have to keep an eye on what’s going on as Morgan gets older.
There’s also a great deal of change in Morgan’s school landscape. I could write a huge article just about the issues we’ve had in attempting to secure educational support for Morgan but suffice to say that it is a long, frustrating, upsetting process that requires total diligence on the part of the parent/carer/advocate. Being a parent of a disabled child, at least with regard to those parents of children with ASD, requires a lot of paperwork and you can often find that one part of your situation has an impact on another. For example, when Morgan was in pre-school we moved house to somewhere larger to better accommodate his needs. This move left us 2 roads outside catchment for his preferred school, meaning we ended up in a long-winded process of appeal to get him back on track (and with it our first, failed EHCP application).
We’re really keen to hear from you and hear your stories of any experiences that you may have had where your autism or that of your child has been failed by your/their support network. Please let us know in the comments or contact us on social media.