Assessment for ASD - advice please

Hi Vivian

I have just joined the community today after finally receiving a diagnosis of ASD this week from the Consultant Paediatrician. It’s taken 3 years to get that with endless questionnaires and a couple of in person discussions. My son is also 10 and he had difficulties from nursery age but I found it hard to get GP help initially until I went back to them after a couple of years and found one who was understanding and supportive of making a referral.

The best support we have had along the way has been from my son’s school who have excellent SEN provision and who put in place an individual support plan based on how he was presenting in school even without a formal diagnosis at that time.  The Head Teacher did a risk assessment and identified very specific patterns of behaviour and triggers and then actions that all adults were required to follow. This provided the consistency in approach.  They set up safe zones for when he ran off during activities and have a quiet work space where children go to complete their school work or talk through things with adults who work with SEN children when they are overwhelmed.  These adults have helped him identify safer strategies for handling sensory overload situations and to use breathing techniques etc to reduce the intensity of the meltdowns. We’ve also had wobble cushions, fiddle toys, action plans and reward plans along the way too. 

The Head Teacher, SEN Lead and year group Teachers have worked very closely with me to ensure the consistency is there in both environments.  It’s helped with preparing him for what’s coming up in the week so visual timetables. Him and I can prepare for the next day and discuss any worries. I bought him a soft toy called a worry monster which he took to school for a while.  He wrote his worries on bits of paper and the worry monster ate them (pouch in the toy with a zipped mouth!) which still works well today.  The teachers let him stay inside at lunchtime and play on the Chrome book with a friend some of the week so there is a controlled and supported daily social interaction.  He also doesn’t do well with socialising and if he does get into group situations they can quickly escalate and lead to meltdowns or aggression because he’s not in control of things.

It was a long journey for the assessment and it takes stamina. I wish I’d been signposted to the resources and information on this website a lot sooner than we were as this would have saved us all a lot of arguments and upset. It made me a lot calmer understanding what my son’s view of the world must be like and that it wasn’t about bad behaviour.  Your diary keeping is a great idea and together with your understanding about her relationships at school and what she enjoys doing all help seed the discussions during the assessment sessions. The last “virtual” session we had before the final diagnosis, with a speech and language therapist was brilliant. It was 30 minutes on a video call and her observations and feedback on the end of that call were spot on. This gave me great confidence in the experts given the small snapshot of his life she had witnessed. 

I wish you well with your daughter’s assessment and hope it’s not as prolonged as ours was as it is painful and exhausting when you don’t feel like you’re getting anywhere. I found it useful to have both focussed time with my son doing what he wanted to do and also some me time, as self care is vital when your child has additional support needs.  It’s easy to forget yourself when you’re used to looking after others.  

Having a diagnosis is a victory and gives me massive hope for his future because as his parents we can now educate ourselves and others (family & friends) on how my son’s view of the world is different and how we can help him make better sense of things to alleviate some of the anxieties.

You’re already well ahead by being in this community and taking active steps. If you can find a way for your daughter to be able to express her thoughts about her worries at school, hopefully they can work with you and her in putting support plans in place to turn things into a positive.

Best of luck. Helen

Thank you so much! That is very helpful!

Hi and welcome to the community! Sorry to hear your family is having a hard time at the moment, Hopfully this might help:

You may find this useful as it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: http://www.autism.org.uk/directory.aspx 

We know that this can be a stressful time, but it's important to know that you're not alone, and that we're here to help.

If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

SarahMod