Almost two years ago we finally received Tink’s diagnosis of Autism Spectrum Disorder. It came, not as a surprise (we were convinced by that point), but as a relief. At last! This report, containing the words, “…a diagnosis of Autism Spectrum Disorder..,” would finally mean we would be able to access support services. It would mean we could apply for funding for extra resources to make life a little easier. Tink would get support at school, or even a place in a special school, if that’s what we decided would be best. She could get speech therapy to help develop her disordered speech, and occupational therapy to help with the physical skills she struggles with, as well as her eating issues…
Ha! Guess again. Getting the diagnosis turned out to be… not a whole lot different from not having it.
The support and services were not forthcoming. Tink was discharged from speech and language therapy there and then, as she had made ‘some progress’. She still struggled to string together two words coherently at this stage, at just over three years of age. I had to beg her paediatrician, who we only see once a year, to refer us to Occupational Therapy. This then took several months for an appointment, although it has, by far, been the most useful and productive appointment we’ve had to date.
And school support, although fantastic, is limited, due to lack of funding. Despite requiring one-to-one support to be available at all times, Tink has this only in the mornings. She does not attend the full day at school and is not even in the correct year group with peers of the same age. We are awaiting a decision from the Local Authority on a place in a special school. We requested this several months ago. Even though Tink has an Education, Health and Care plan (needed for such a placement), she is, at present, without a school place for September.
On ‘Diagnosis Day’, we were signposted casually to websites and local support groups by means of a poorly-photocopied list, much of which was out of date. We were waved off with a cheery, but hollow, “ring if you need anything!” and were left to get our heads around what the future held for Tink and our family. We felt, as do many, many other families (I have since learned), diagnosed and dumped.
What would be really useful is for autism services to be consistent, co-ordinated and available throughout the UK. But this is not, and never will be, the case. Different healthcare trusts and local authorities have differing priorities on where they spend their budgets. Where you live dictates what kind of support you can receive – if you can find out what’s available in the first place.
What would also be useful is for proper, up-to-date and clear signposting for all newly-diagnosed families. Yes, I know there are websites that try to do this already, but, if I had a pound for every time I’ve seen a post in one of the various Facebook groups asking, “what happens now my child has a diagnosis?”, I’d be pretty rich and not in need of financial support!
For whatever reason, the information just isn’t getting across effectively. Perhaps there are too many websites, forums and Facebook groups and people feel overwhelmed a the wealth of information? The NHS website directs readers to the websites of the National Autistic Society and Research Autism to find out more. These sites, whilst full of information, are rather mind-boggling, particularly for a family new to autism and the related terminology. If you ask a question on a forum of Facebook group, you run the risk of receiving several different answers. It can be very hard to seive out those that are factually correct and most useful.
I’m not sure what the answer is, but I do know the current system doesn’t work well for so many families. Several parents contact me through my Facebook page to ask for advice on where to go and what happens next. So many families seem to feel like we did after diagnosis – left to drift on our own until we finally found our feet a little by ourselves.
Yes, receiving a diagnosis can help immensely. It can help the EHCP process, it can help a benefit claim and it can help make some sense of your child’s behaviours. But don’t be fooled into thinking it will unlock the door to a full range of services throwing their help and advice at your feet.
Get your armour polished and ready – if you want any help, you’ll be going into battle.
Kelly is a mother of two – her son H and daughter Tink. H is home educated, Tink is autistic. Kelly is a self-employed Virtual Assistant… Life is busy!