Care Opinion Values Your Opinion
Care Opinion is an independent service where you can safely share feedback anonymously about Children and Young People’s Autism Service.
What we want to learn:
- What was good?
- What could have been better?
- How did you feel?
Access or submit Care Opinion stories on Children and Young Peoples Autism Services.
Freephone 0800 122 3135 Monday – Friday, 9:00AM – 5:00PM
Care Opinion will publish your story anonymously on careopinion.org.uk
Care Opinion will pass on your story to our staff to help is make a difference for everyone.
Video Feedback
See the below drop down menu for written Service User Feedback received by the Children and Young People’s Autism Service.
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Testimonial 1 - Anxiety and Me
When my mum suggested I should do a course about my anxiety, I was absolutely terrified. It was in a group and online over zoom which is something I haven’t really experienced before, making my anxiety even worse. But after the first week of Anxiety and Me I realised I didn’t need to be so terrified. The course is so well done, from relatable and interesting information to new ways of coping with my anxiety, I have genuinely benefited from the sessions and still use so many aspects of the course in my day-to-day life. The exercises and tasks we did during and after the sessions were incredibly helpful for me, the tailored approach for everyone in the group made everything feel more personal. I love to draw, and I use my art as a form of expression, so the ability to complete tasks we were given in a form of art was absolutely incredible. I found myself having better understanding and relating to the material as well as being able to participate in the discussions because of that option.The Anxiety and Me sessions gradually got more and more comfortable for me, Charlene was so kind and understanding, if I ever needed a break or did not want to answer questions it wasn’t a problem, she gave me time and patience to develop my confidence and I felt that she really understood what I needed from her.
Participating in sessions with others was what I was most nervous about, but I ended up benefiting from them being there. Being able to relate to what they said made me realise that I was not alone in my anxiety. The material we covered and the tasks we were set to do outside of the course gave me a completely different understanding of my anxiety, how it works and the way it affects me. Throughout the sessions every one of my achievements were celebrated, every small step I took to build my confidence, from turning on my camera to ordering at a restaurant felt like a huge accomplishment. I feel the changes I made because of the course have benefited me in ways I could never have expected going into it. I am so grateful for the skills I learned through Anxiety and Me, it has made such a positive effect on my life and the way I see my anxiety.
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Testimonial 2
We are on the ASD journey with my 14-year-old daughter. Over the years, the signs were there, but so too was an underlying medical condition that took responsibility for them. So here we are, 14 years later and finally exploring the possibility of Autism.The assessment process is a long and frustrating time spent, in what feels like, limbo! If it feels like that for me as a parent, how hard must it be for our children? Especially, if, like my daughter, they are older, more aware, involved and invested in the need to know, to have answers and validation. The wait is hard and the complexities around girls and autism are scarily accurate and evident in my daughter. So, the introduction of the new Early Intervention Service has been like a lifeline for us both…a bridge in the gap between referral and assessment. It doesn’t shorten the time it takes to get across, but it does fill it with invaluable support, advice and learning.
The programme’s focus is on our young people, and how we can better understand and meet their needs, but such a strong emphasis on self-care also came through in every session I attended. All were relaxed and welcoming, with mums and or dads sharing experience, tips, advice, support and some much-needed humour!
The facilitator was fantastic. Charlene’s calm and patient presence encouraged and enabled lots of interaction and questions that added extra value to the content, a well-balanced mix of information, tips, strategies and shared lived experience. I enjoyed and took something away from each of the sessions. I think what I gained most wasn’t necessarily new learning but new perspective. I find myself referring back to and using the things I took away and I can honestly say that accessing the support the service offers has made a difference to me and my family.
The Anxiety and Me programme deserves special mention. The structure, having sessions for parents as well as the child created a kind of shared experience which encouraged my daughter to share what she was doing in her sessions and seek help and input in the tasks. Approaching anxiety from that different, task based, perspective seemed to remove some of the personal pressure and helped my daughter explore and express her experience with anxiety in ways that were, yes challenging, but also creative and empowering. Everything, from the material itself and how it was covered, to Charlene’s ability to connect with my daughter on her level; the way in which she picked up on her interests and strengths and integrated them into the tasks, was amazing. The progress my daughter achieved from first to last session was beyond what we would have imagined. The anxiety hasn’t changed but her, and our, understanding of it has. She is still using the techniques she learned, things that genuinely help her and her ability to express her feelings and needs and therefore our ability to support her.
We are so grateful for everything we gained from accessing the Early Intervention Service support sessions and would whole heartedly recommend them to other families. Genuinely, they have made a difference. Thank you!
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Service User Feedback
The first help or understanding I got after my child was referred for autism assessment was at the information day. The other adults were saying things that could have been about C. Picky eater, doesn’t make friends easily, gets overwhelmed and misunderstood at school, soft fabrics, scratchy labels.
I took it all in and felt I was in the right place. These people were dealing with the same type of challenges. The lady doing the talk Charlene gave out such good information on strategies to help deal with these behaviours. I heard the word neurodiversity and felt happy my child wasn’t bad or mad just a different way of working things out.
Since then I have been attending zoom courses to learn new skills for home and try to pass them on to the school.
The Early Intervention Service staff have been invaluable to me. They have helped me understand when C is unable to regulate himself, how I need to let him take the nap or the walk or whatever he needs on that day.
The Early Intervention Service is an amazing service that has helped me a lot in understanding my child . I feel supported and understood when I call. I’m just really glad they were there for me and C when we were told he may be on the spectrum. Its so good to know they are still there to listen and talk when I need to.
Thank you to all at Early Intervention Service – I am indebted to you.
Majella, C and E.
Ruairi * (*made up name)
“When our son Ruairi* was referred about possible autism aged 3, we were warned there would be a very long wait for an assessment. Like many others we were worried and concerned, knowing the challenges everywhere in the health service at present.
We were also told there was an Early Intervention Service, but didn’t know what to expect. As parents, we both attended Tier 1, and from the outset were glad to know we weren’t alone. Knowing that the time waiting for assessment wasn’t going to be ‘wasted’, and that there were lots of Tier 2 sessions which would cover relevant topics and tips we could use in the meantime was reassuring. It was really helpful to hear from other parents about their experience, and the differences in all the children and young people waiting for assessment.
Ruairi* keeps growing and changing in amazing ways, and the EIS sessions either one of us have attended have been really educational about many aspects of life with an autistic child, though no two children are the same. Time for Toiletting, Tackling Transitions, and Keeping It Visual were all particularly useful at the time, and because as parents you can contribute to the sessions we learnt from two sets of experts – the professionals and other parents.
There should not be such a long wait for assessment; but, by being engaged with the EIS we’ve learnt a huge amount and gone through a process ourselves. Home and school already had many of the EIS strategies in place so the diagnosis, when it came, felt more of a formality.
I would thoroughly recommend attending the EIS sessions, even the ones that may not seem immediately relevant to you and your child / young person. There are things you can trial and put in place NOW, whatever the result of the assessment when you get there. Better understanding Ruairi*, and finding the strategies that help him, has hugely helped us as a family”
JH
“I really enjoyed all the sessions, i think i attended 12/13, through zoom. It can be hard at times to get transport/sitters so it was nice to do them in the comfort of your home.
It’s a really relaxed and welcoming environment, there’s no pressure to use your camera and you can choose to speak or type. Even from behind a screen you can feel the girls genuine warmth and interest in your opinion. You can tell they really enjoy their job and want to help parents not only feel heard but to understand their child’s sensory needs better.
My son also attended the child sessions via zoom and really enjoyed them. Charlene was warm and enthusiastic towards the kids. She knew they might be nervous so made sure to ask them individually for feedback. She patiently waited on each response before moving forward to the next screen.
Everything is broken down into chunks so its easy to understand for adults and kids. EIS use short videos and simple PowerPoints so its easy to screenshot a tip for future use. There’s explanations on senses, hormones, anxiety, hope, and a range of other interesting topics. The ABC chart is a great tool for recognising triggers, so you’re more prepared as a mummy. They also email you the information after sessions so you have the option to look over it anytime.
My two favourite sessions would probably be “i am me” and the 5 “why we do the things we do” sessions. They not only helped me understand my sons sensory issues and myself better but all of us and all of our unique ways. We are all so different but we’re also, so alike.
Sometimes you have to really Push to get your child the support they need and it can almost make you want to give up. The Early Intervention Service reminded me my opinion as a parent is valid too and to continue to be my childs voice/advocate without feeling guilty/judged.
A lot of schools would say there’s no support out there with or without a diagnosis. So I’ll definitely be promoting EIS to parents/school in future if they’re struggling. Cant wait to see what the New neurodiverse session includes.
I share a lot of the holistic views EIS promotes, so it was nice to see executive function and emotional regulation explained in manageable chunks. Seeing all the other parents/carers share reminded you, your not alone in some of the struggles we face.
KC
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Tier One Feedback
That there is loads of information out there and fantastic help and support from yourselves. I was feeling so lost and confused and I didn’t know which way to turn or what Road to go down. Thank you so much.
The session gave a very positive message for the future and I felt was reassuring and hopeful for finding a place in society where my child’s differences, that which makes him exceptional, are seen as strengths.
Just so glad everything is needs focused and not diagnosis led, the session was so compassionate and informative.
Having had 2 other children go through the process previously and just have to wait until assessment for any support, I think this is an incredible idea and it makes everything feel so accessible.
It makes you feel more part of a community of people who understand what its like having a child with Autism. Feel less isolated, thank you.
The session was really helpful. I learnt a lot. It is very reassuring to know that there is help now. Getting to interact with other parents is brilliant. The facilitator was professional and knowledgeable.
Loved the ethos of inclusivity and the positive approach to autism.
Reassured by the number of services and the thought that has gone into them.
“There is support available before assessment”