• phippsamy8

When people don't believe you (and then you start to doubt yourself too).


One of the things I regularly hear from parents who think their child is autistic, but don't have a diagnosis yet, is that they don't feel supported and listened to. When they share their worries that their child is struggling, they are often made to question themselves and their ability as parents instead of having their concerns taken seriously. They may be told by other well meaning parents (perhaps seeking to be reassuring) that "all kids have things they find hard", or that "they'll grow out of it". Or perhaps suggestions are made as to how they really just need to be more firm, and then their child would be fine. Inappropriate parenting courses, designed for neuro-typical children, are offered by health services - again suggesting the fault lies with the parent. Consideration is not given to the fact that the parent has often researched and read every book and website available in desperation, and by this point could probably run hundreds of courses themselves! Schools often struggle to see what you see as a parent - especially if your child masks in school and then let's it all out when they come home. In these situations, rather than being listened to and believed, parents are frequently told "but they're fine in school, there's no problem". The parent, however, sees a very different picture every morning when they desperately try to get their stressed out child to school, and every night when they come home totally overwhelmed and unable to cope.

When we received our diagnosis, the fabulous team assessing us asked if I had been nervous the night before. I admitted I was - not about the possibility of a diagnosis, but rather that they would tell me that the struggles we were having were due to parenting issues, and we just needed firmer boundaries. The team were astonished that I had felt like this - to them our diagnosis was obvious and we should never have been made to feel that we were imagining it. However, this is often the reality of life before a diagnosis, especially for parents of kids with autism and no learning disability. People are confused by your child's ability to speak eloquently, or how well they can mask their difficulties. They think you are over worrying, or wanting a diagnosis where one is not needed. Often the real picture is only seen at home, when the child is safely away from others and can be themselves.


My advice for parents in these early stages would be to search out other parents who are having similar experiences - whether face-to-face or online. It's such a joyous relief to talk to those who understand and really know how you feel. Arm yourself with knowledge about your rights, and speak with confidence as your child's advocate. At the same time, if you're lucky enough (as I was) to already have friends and family who listen to you, respect and support you, then cherish them - because let's be clear, not everyone out there doubts you. It is this support that will help give you the strength to trust your instincts and insist on getting the right provision for your child.


Some helpful resources:


Supportive Parents provide advice and support to parents going through the SEND system at school, including helping them get the right support. They are an invaluable service:

https://www.supportiveparents.org.uk/


National Autistic Society Branches - these are local support groups for parents of autistic children, that run all across the country:

https://www.autism.org.uk/what-we-do/local-branches


If you are in South Gloucestershire you have and excellent Parent carer group:

https://www.sglospc.org.uk/

If you are elsewhere in the country search for something similar online - there are lots out there.


Autism Family courses (you don't need to have a diagnosis to access these): www.autismfamilies.co.uk






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