Perfectly Autistic - Neurodiversity in the workplace

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Need For Children’s Mental Health Services At An All Time High

I have dealt with Child and Adolescent Mental Health Services (CAMHS) for a number of years, being the parent of two children who are autistic, both diagnosed with ADHD as well as a host of anxieties. Both children are currently on CAMHS waiting lists for further assessments, so I understand all too well the issues that appear when you start to scratch the surface.  

CAMHS is the NHS service that is meant to assess and treat young people who may have emotional, behavioural or mental health difficulties. According to new data from the NHS it revealed a record high for referrals to child and adolescent mental health services in March 2021. At 65,533, it is more than double the number in March 2020 and 68% higher than March 2019.

Being passed from pillar to post

Dr Carrie Grant MBE who is a parent to four children all with additional needs, tweeted a few months ago asking people for their views on CAMHS following Nadine Dorries, Minister of State for Mental Health, describing it as” well-resourced and robust”. The post had 3.2K comments with people sharing their stories being passed from pillar to post and parents not being given the support that is needed.

Waiting lists for autism, ADHD, dyslexia, mental health conditions and behaviour issues can take years. Some areas including Kent and parts of Wales are up to five years. Lisa Armstrong, a Global Broadcast Manager in Northern Ireland explained: “We waited three years for a statement of education for my son. This is for his ADHD, he has already been diagnosed with dyspraxia and dyslexic. We’ve had to fight for every referral and diagnosis.”

A 30 month waiting list

Amour Alaoui, like Lisa just feels she has to keep fighting: “My son has been given a wait time of 30 months. By the time he gets assessed he will be pretty much out of school. He reported feelings of self-harm and suicide with a plan. He was told to engage with mindfulness techniques (relax, have a bath, get more sleep) before being discharged with no further support. I was advised to attend parenting courses which I completed. Then my son actually self-harmed, which I reported to the crisis team. The therapist rang back two days later, saying there is nothing they can do. Just carry on with mindfulness techniques.”

One mum who wishes to remain anonymous knows what it’s like when your child is mis-diagnosed. “Our 8-year-old son has emotional and behavioural difficulties. We chatted with the school SENCO who confirmed that we should get him tested for Autism. We weren't convinced but knew there was something he was struggling with. We put him down for the assessment in October 2019 and CAHMS then referred us to Healios, who did a virtual assessment in July 2020. We did 6/7hrs worth of interviews and then got a report to say that he isn't autistic but they think it might be ADHD. So back onto the waiting list, starting at the bottom with another long wait.”

It’s not a magic wand

Not all CAMHS have separate waiting lists as I found out when talking to Jenny Murray, Clinical Psychologist at Buckinghamshire CAMHS and director of Berkshire Psychology. “In Buckinghamshire we screen for both autism and ADHD as there is a lot of overlap – they often co-exist.” Jenny explained “CAMHS isn’t a magic wand and they can’t provide everyone with support. For autism and ADHD, it is a diagnostic service, it’s not a follow up service.” She continues: “The demand has even increased for private diagnosis with some people having to wait 8 months for an appointment.”

 Anna Kennedy OBE is founder of Anna Kennedy Online, an autism campaigner who set up her own school for her two boys who are autistic, as there wasn’t a suitable school available for them. “It is understood that national standards are in place in relation to waiting times for CAMHS. Whist this is to be welcomed, from speaking to families, problems still exist. In relation to obtaining diagnostic assessments and treatment, our experience at the charity is that the wait can run into years. The result is that a child or young person’s well-being and educational outcomes are often adversely affected…urgent attention is required since services are in crisis.”

Born Anxious

Kellie Croft is mum to 7-year-old Oscar and founder of Born Anxious, a sensory friendly clothing label and now global movement spreading a message of kindness. Kellie explains: “Our experience with CAMHS in Kent has remained non-existent since referral in September 2018. Oscar is currently managed by medication given by his consultant, which should be managed by CAMHS. Oscar was presenting with behaviours associating to Dyspraxia and ADHD, alongside his autism, absent seizures and extreme anxiety. This resulted in him having 49 injuries in one term. We recently received a letter from CAMHS offering us a group zoom session to discuss ADHD, but that they are unable to discuss individual cases. The strain on the service in Kent is very apparent and we have no measure of how long this will be until we are seen. Oscar is an extremely complex child, but the sad thing is there are lots of Oscars on waiting lists with no end or measure of time.”

 When it comes to diagnosis and understanding, knowledge is power. Jenny Murray’s advice if you are waiting, is to make sure that you are attending workshops, reading and making changes to your child’s environment. She believe, you don’t need a diagnosis to start putting strategies in place.

 For further information visit: 

www.annakennedyonline.com

 www.bornanxious.co.uk

 www.berkshirepsychology.co.uk