Autism in Medway – Awareness and Acceptance

In which Vicki Sigston looks at the state of autism support in Medway..

I was asked by the Political Medway team to write a piece in honour of Autism Awareness Month which runs throughout April.

I must admit that at first I was a bit stuck with how to approach this. I have some knowledge of ASD (Autism Spectrum Disorders) but I felt a bit disingenuous as I started to write my piece. The main reason for this is that I have no personal experience of accessing autism services and support. The very first post I wrote for the Political Medway was about period poverty, and quite right that the two male owners of the page ask a woman to write about that – so I didn’t feel I should write about this.

But while talking to friends who do have personal experience someone suggested that what might be great would be to ask some questions of those families in “the system”. Those families where there are formal diagnoses of ASD and who have used, or try to use the support in the local area.

So, thanks to the genius survey creating tool that is Survey Monkey, I put together a very short questionnaire and put out a plea on social media for people in Medway who have personal knowledge of local support to respond.

I was amazed, in a couple of days I had almost 50 responses, plus many direct messages too. Those who responded did so very openly and passionately. The questions had obviously stirred up some feelings and as I read through the responses I started to understand why. 

Medway does not get ASD support right. Hardly ever it seems.

So, much of the rest of this piece is from the mouths of those who replied to my call for answers, and being that this is a political platform I ask, no actually, I implore, any and all politicians, new candidates, decision makers and NHS staff to read these words and really pay attention to what the people in Medway, the people you promise to help and support, really need.

I asked how long it took for a child or children in Medway to receive a formal diagnosis of ASD.

17% answered between 0 and 6 months.

15% answered between 6 and 12 months.

20% answered between 12 and 24 months.

48% answered over 24 months.

This was the question I had the most direct responses from, because my options, which “only” went up to over 24 months did not go high enough, many families are actually waiting closer to 48 months – 4 years. 4 years for a proper diagnosis and to be able to start accessing support and education.

I also asked:

“Do you feel you have good support from Health Services and Health Professionals in Medway with relation to your child/children’s autism?”

79% of respondents answered No.

I then asked those who answered no:

“What could be done to improve support for you and/or your child/children”

(Politicians and decision makers – please take note!)

There were many, many comments about a lack of support after diagnosis, imagine waiting over 24 months for answers just to be sent away with little to no ongoing help..

“When my son was diagnosed I received a leaflet for the National Autistic Society and was advised to google. There was no support or advice offered by the paediatrician.”

“We had our diagnosis and then discharged. No support or advice what we could do next.”

“Support after diagnosis, not just diagnosed and discharged”

“More information not just diagnosis and two websites and names of two organisations”

There were also comments about funding which is designed to help children with ASD in mainstream education:

“Council needs to check that the support stated by school is given not diverted elsewhere.”

“Much better support dedicated service for high functioning ASD.”

“Professional assessments of difficulties and EHCP that meets legal requirements for provision”

“Mainstream school is too much and special needs school isn’t demanding enough”

“Not rely on school to see difficulties as this is not their field of expertise. Greater mental health support and services not just those at risk from suicide.”

There were brilliant suggestions about the kind of support parents and families would like in Medway:

“More parent education classes for understanding autism & sensory therapy sessions for kids”

“Regular meetings with practitioners, advice and support”

“Parenting courses like daisy and daisy plus.”

“On going support and workshops to help also more help with education and someone to talk to if in crisis”

It seemed that everyone answering had the same thing to say – there is little to no support available for families in Medway when it comes to autism. What support there is is patchy, hard to access and does not go deep enough into the problems that these families are facing.

When you look into the figures behind some of this it is easy to see why things are looking so bleak, Medway council is facing a £2.7 million overspend on its high needs funding this year.

But this is not a new problem, In 2018 an Ofsted report slammed Medway council as failing it’s most vulnerable children, stating:

“Medway’s education and service leaders do not share one vision and strategy for SEN and/or disabilities…No arrangements are in place to ensure effective joint oversight and clear lines of accountability…Little progress has been made in addressing several of the pressing priorities for improvement identified as far back as 2012…Leaders’ understanding of what has and has not improved in the meantime is limited”.

The report pointed out that the council had been unable to provide enough local educational provision for SEN (special educational needs) or disabilities and so spent a large portion of the budget using services outside of the area, including the increased transport costs associated with this short sighted strategy.

It seems to me pretty unforgivable that our council has been unable to improve things since the first failings were pointed out in 2012, seven years ago, and actually it’s about time that they put some real plans in place, starting perhaps by listening to those people who are living this journey and who need this support now more than ever.

I’d like to end this piece by sharing some of the comments I received in answer to the following question:

“Please describe in one or two sentences what Autism/ASD means for your family”

(I think these sum it up better than I ever could)

“Unique child with some hard times, but we survive it and make us stronger! Live and learn every day”

“Victories, Helplessness, misunderstanding and learning”

“Quirkinesses and adventure. No 2 days are ever the same.”

“Autism has meant a continual fight between my family and the so called professionals with help only being given when forced to. It has meant alienation from friends, family and schools etc but has filled me with pride when my sons against all these odds have achieved.”

“A different way of life, isolating, lack of communication, Medway council being a nightmare, fighting battles one after another to get support.”

“A prison sentance without any support”

“No holidays no time out no alone time , lots of shouting and screaming swearing and Door slamming. Family time is rare but when everyone is together it is lovely for a short time and that’s what makes everything else manageable”

“Anger, tears, intelligence, heartbreaking, loving”

“My son with ASD makes me a better person, he sees things in his own unique way and us often oblivious to the bad things in life. I just wish society embraced these children as given the opportunity they would make amazing mentors to many other kids”

“Our days may be more challenging than the norm but with support and awareness, anything is possible”

Vicki Sigston is an Antenatal Practitioner and Breastfeeding Counsellor currently living in Medway. She and her husband have 2 boys that they home educate with support from Medway’s incredible home ed community. You can follow her work life on Facebook and Instagram.
Vicki has a website called Mum of 2 Boys that she likes to post (hopefully) useful bits and pieces on too. She also suffers with a chronic condition called Endometriosis and she shares her journey with all of that here.