Changes Parents Face With an Autism Diagnosis

It is likely that parents will have spent a considerable amount of time thinking their child is just being difficult, or their parenting is not good enough before they start to wonder if there is a reason the family is struggling with day to day issues that seem so straightforward for everyone else.

Behavioural difference and indicators

It is often not until we start to see our children in amongst their peers that we really see there is a ‘little something’ setting them apart. At this point most parents start to research, or if they are lucky may get a gentle nudge from a school SENCO, or they meet a parent with a similar child who has a diagnosis. There comes a time when you realise your instincts are not wrong. Then you enter the agonising waiting game of trying to get a diagnosis

Road to getting a diagnosis

Generally you start with a GP who is unlikely to have had much training on special needs in their medical training. If you are lucky there might be a good disability team in your post code area to be referred to. There will certainly be waiting lists. Even if you are fortunate enough to be able to afford a private assessment it is likely this will not be accepted by your local Health and Education teams until they have completed their own assessments, which can take years to complete due to the challenges of under-funding throughout local authority education, health and care.

Changing and adapting your parenting

So, you start to research more and adapt your parenting and do the best you can while you wait. All the research and evidence tells you the earlier you can get your child help, the better. And yet you can’t get anyone to help. You find out that support and services are not guaranteed and are more like a postcode lottery – one that you had no idea you were entering into. You start to reach out to charities or support groups but may struggle to qualify for help while you don’t have the diagnosis – Agh!

You likely see-saw between coming to terms with your Childs potential diagnosis and the effect that will have on your family as a whole, and hoping you are completely wrong. Many parents agonise or even disagree over if they want their child to have a ‘label’. But if they do not, how will they get the help their child needs? The sleepless nights or the work of looking after the actual child themselves is likely not really the hardest part. This is still your unique child and you love them, and you find you can go further and deeper than you ever imagined possible. However, the helplessness and hopelessness you can feel at simply not being able to get a sock on your child on a wintery day is just SO hard. The frustration and anger you feel at not being able to get help from the services that in theory only exist to help someone in your situation, and yet are impenetrable. The exhaustion at being continually told you have to fight for the help you want, when you are already dead on your feet just trying to get through each day.

Getting a diagnosis and how to help process the emotions

Finally getting the diagnosis can be bewildering. Despite the fact that you knew it deep down, it can still feel a real shock and deep sadness when it is confirmed. And the likelihood is, that like me you will find yourself standing at the doorway of the Health Centre as you leave with your newly diagnosed child and their new label that you never wanted for them, and - if you are lucky - a leaflet about their diagnosis, but still no real help or guidance, and another list of things you need to do and yet more long waiting lists you now need to add your child to – it’s soul destroying.

In my experience the hardest part is dealing with all the local authorities and their systems and procedures that sadly feel to the parent as if they are designed to get in the way of you accessing the help your child needs. This is not to criticise the people working within the system, I’ve met many professionals who are helpful and clearly distressed about the limitations they are working within, doing everything in their power to get us help, but in my experience the good ones often burn out fast.