Five Things That Scare Parents of Autistic Children: Part 2: Failure of Support

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.

Last time, I was talking about fear of intolerance. This time I’d like to talk about our reliance on support and our fear of that support being removed.

Every parent that has a special needs child relies, in one way or another, on a network of support. That support comes from a variety of places but they all fit together to make day-to-day living reasonably achievable. A huge fear for autistic parents is that that system we depend on will change or fail.

School

Parents of school-age autistic children likely have a very close relationship with their child’s teachers. Hopefully this will be a positive relationship centred around the various requirements their child needs to be able to learn effectively and develop at a rate as close to their peers as possible. We’re lucky that most of the teachers we have come into contact with have gone above and beyond their role as educators to ensure that our son is supported. This doesn’t always run smoothly but luckily they are able to deal with his challenging behaviour in a way that is constructive and we work closely with them to ensure there are more bad days than good.

We also have a good SENCO (Special Educational Needs Co-Ordinator) who is instrumental in supporting our child, not just in his current placement but also in the process of securing an EHCP and in applying to junior schools.

This support is essential for us and our son. To have a nurturing environment in which Morgan can learn and remain mostly calm is essential to his development, to ensuring he gets the most out of education and enables us to take care of everything else. Not everyone is so fortunate and I read a lot of horror stories of educational situations that are appallingly unsupportive. Teachers that react badly to challenging behaviour, SENCOs that fail to represent the child’s needs within the school. Autism Kids on Tour has some really disheartening examples of what can happen when teachers and other school staff have a poor understanding of how to support autistic students.

Autistic Kids on Tour – The Abusive Dinnerlady

Autistic Kids on Tour – The Avoidable Fight in the Playground

The worry here, when you actually get a good support network, is that the rate of change can be so rapid, that this comfortable situation may be lost. Teachers and TAs change jobs, SENCOs move on and every year we inevitably have a new classroom and set of teachers to deal with. With that comes the fear that the next teacher might not get it and the support is impacted while you either skill-up a new teacher or deal with the idiosyncrasies of an ill-informed one.

Council & Government

Accessing financial and educational support for an autistic child can be a soul-destroying, nebulous maze of bureaucracy and the support you’re entitled to is both unclear and always under threat of change.

The first major hurdle can be applying for and being granted Disability Living Allowance. Although it doesn’t require a formal diagnosis to be granted, many applications are unsuccessful, often due to how the form is completed. For many this will be the first major piece of paperwork that requires you to describe, at length, how your child acts at their worst. Upsetting as this can be, it is something that becomes oddly familiar when attempting to access support.

Your next major battle with the council will be the application and implementation of an Educational Health & Care Plan (EHCP). This is a formal document that outlines your child’s needs and is developed in co-operation with a co-ordinator at the council. It is a system fraught with complication, duplication (get used to filling in lots of forms), errors and a lot of waiting. There is absolutely no guarantee of getting one and the application process is long and stressful. You’ll be required to submit evidence from educators, doctors, SENCOs and probably a report from an educational psychologist or two. Once the application is made this is reviewed by a panel who may choose to turn down the application.

Once awarded the right to an EHCP, you have to work with an EHCP co-ordinator to actually create an accurate EHCP document. The EHCP is a document that is supposed to clearly state the child’s needs and how those can be best supported, whether they’re in mainstream education or in a specialist facility. The reality is that your EHCP co-ordinator is an underpaid, overworked administrator in an underfunded children’s services department with a caseload bigger than they can manage. The document may broadly reflect your child’s needs but is likely to be prone to errors and need constant revisions.

These things are the building blocks of support and it’s hard not to feel like it’s a house built on sand. Every time something is revised, you get the fear that you may accidentally untick a box that is core to their current support. There’s a really strange paradox to being an autism parent in this situation. You obviously want your child to do as well as they can but there’s also a fear that if they do too well they might therefore become ineligible for support that is essential for their current situation. This is not always the case but in a situation where support usually comes after a long fight, so too comes a fear that it can be taken away too easily.

Medical

Medical support is perhaps one of the flakiest and least reliable means of support that an autism parent has to rely on. I’m not sure if other children with different disabilities enjoy a closer relationship with their paediatrician but ours is almost non-existent. In his lifetime (almost 7 years) our son has had about 5 paediatricians. I think 3 of them actually met him, the rest changed jobs before his six-monthly/annual appointment was due. We don’t currently have one.

This can be quite daunting when you assume that the paediatrician must be the most medically knowledgeable person involved in your child’s care. In reality they seem to only get involved if something needs to be prescribed that a GP is unfamiliar with. I’m assuming this may be reflected differently depending on region so I’d be interested to know if other people’s experience is different.

Prescribing is another interesting element of the autism parent’s journey. Doctors often aren’t aware of how to effectively deal with ASD so tend to offload the bulk of the work to the paediatrician or other specialist clinics. This is especially obstructive when trying to get regular prescriptions. Our GP can’t prescribe melatonin so this has to be done by the paediatrician which, if you’ll remember, we don’t have. Luckily someone in that office is at least still signing these off. For now.

One thing I’ve come to notice about our medical support is that it’s almost entirely separated into unrelated services that may or may not be any use to you whatsoever.

For example, your child may have sleep issues relating directly to their autism, so you go to the GP. The GP refers you to the paediatrician. The paediatrician is not an expert on sleep but refers you to the sleep service who ask you to go to a seminar about techniques to aid sleep. You go to the seminar and listen to the methods which all seem unsuitable for children with ASD. When you ask the instructor if they might be suitable, they have no idea. They’re not trained in supporting children with special needs. Back to square one you go.

Family & Friends

This is perhaps the most important source of support for any family, but felt all the more acutely by autism parents. It’s also, luckily, the most reliable.

As a family unit with an ASD child we often reach out to extended family and friends for help. Whether that’s babysitting, accompanying us on days out or having one of the kids overnight, this support is essential for us. Unlike many other parents, families with an ASD child can’t bring in short-notice babysitters. Anyone that spends time with our little guy has to have gained his trust and be prepared to deal with him in whatever mood he finds himself in, which can be challenging!

The fear of losing this support is less palpable than the others because we’ve grown to trust in it, but if it weren’t there we’d be totally lost! If parenting takes a village, then autism parenting takes a village who have all been round several times for tea and have become really good at listening to long conversations about one very specific thing.

 

That’s all for this entry. I’ll have to start pumping them out slightly quicker than this if I’m to get them all done by the end of the month! These articles are being written as part of the run-up to World Autism Awareness Week which is particularly important to us here at DadGeek. Join me next time when I’ll be talking about how we can be scared of unexpected change.

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.

Situations like this can be isolating. If you need someone to talk to try BetterHelp‘s range of online resources.

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