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I was feeling nervous the day before our diagnosis appointment and felt the need to do some last-minute reading on ADHD. I knew Bookasaurus was being assessed for Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) but was sceptical as to whether he really had ADHD or whether it was his sensory challenges that were affecting his ability to focus on what he was doing.
This has been another stage in my continuing acceptance journey of Bookasaurus’s differences and needs, it’s challenging as a parent.
I am trying to be as open as I can to understand what Bookasaurus is experiencing but I have resistant thoughts in my head like ‘does he really have Autism, I’m really not sure’ or does he have ADHD, what is ADHD?’ We all have stereotypes and prejudices of what these things are or what a child with Autism or ADHD looks like and how they behave. However, in comparison to 20 years ago, there is more acceptance and understanding of diversity and each child is different.
In the appointment it came out strongly that Bookasaurus had ADHD, he scored highly on the Connors Survey (survey completed by parents and the teacher) the Paediatrician told us that anything over a 70 score was significant.
I said to my husband that is it was confusing because in some areas Bookasaurus did seem to fit into ADHD and in other areas, he didn’t. My husband wisely said that every child is an individual and is going to show up differently, with different challenges and quirks. My husband at first found it hard to accept that Bookasaurus had differences and that we should seek support for him so the fact that he was being supportive was a huge step forward. ‘Autistic people have varying and complex needs from 24-hour care to simply needing clearer communication and a little longer to do things’ – National Autistic Society Website, see link in my Tips below.
I am now learning from other parents and professionals that ADHD and ASD often go together and it is very common to have this joint diagnosis. This has given me confidence that we got it right.
I think I am finally accepting that Bookasaurus has differences from other children and needs extra support so one more ‘label’ isn’t too much of an issue. Bookasaurus is still Bookasaurus, he hasn’t changed overnight. The diagnosis just means we know where we are and we can continue to make sure that he gets the help he needs and just enjoybeing with him. It will also open up some extra support and resource for him.
The Paediatrician didn’t tell us whether the ASD and ADHD were mild, moderate etc apparently they don’t do this. Although I’ve heard other parents and blogs talking about ‘my son having mild autism’ etc so this could be different in other areas of the country or just that is the parent’s view of where their child is on the spectrum.
We will now get a letter from the Paediatrician in about 6 weeks confirming the diagnosis and a follow-up appointment in about 4 months’ time (I’m sure this can vary depending on the area you live in and which service is handling working with your child). We also get a resource pack with information on ASD and ADHD, parent’s courses etc.
I’m thankful that we have a diagnosis while Bookasaurus is so young and we can just get on with learning more to understand and support him. A friend asked me how I felt after receiving the diagnosis and I said ‘liberated’ I even surprised myself with my reaction! It’s emotional too and I just need to give myself some time to process, look back on all we’ve achieved so far and be kind to myself.
Tips for Before, During and After the Diagnosis Appointment:
- Often you will be told that your child’s diagnosis appointment isn’t going to be for another year or more. Visualise phoning up the relevant service and an appointment becoming available, how would that make you feel? Be determined, you’ll often be put on hold, but keep imagining how great it would feel to have that appointment booked in sooner. I have certainly rung up and the lady has said ‘oh yes we have a cancellation and you can meet with the paediatrician next month’.
- It can be hard for Dad’s to accept and understand that their child sees the world in a different way and sometimes it can feel a bit too close to home. Some suggestions/words of wisdom from someone that your husband respects (a headteacher, SENCO, teacher, friend, colleague etc) can encourage them to move forward.
- Share with work that you have your child’s appointment coming up so that they can be more understanding, flexible and supportive
- Give the clinician as much information as possible before and during the appointment
- Take notes if it helps
- Take someone with you as an extra pair of ears
- Ask questions – what’s the evidence for that result, what does that mean etc?
After:
- Give yourself time to process
- Share the diagnosis with friends and family (where comfortable) and anybody else, it’s surprising how many people know someone with Autism or ADHD and can empathise or have something useful to share with you. More than one in 100 people are on the autism spectrum (National Autistic Society (autism.org.uk) and the figures are very likely to be higher.
- Again be determined and chase any flow up appointments, as above.
Let me know what you found most helpful from my blog today in my Comments section, if I you have any questions or any suggestions. It’s not easy being parents of children with extra challenges but together we can ‘Learn to Love Autism’ and support our children and ourselves so that we all thrive together.
You can also e-mail me at jo@learningtoloveautism.com, drop me a line using the form on my Contact page and see my coaching for mums service on my ‘Coaching for Mums’ page.
The suggestions provided on this website are for information and sharing purposes only. They should not be treated as professional medical advice or a substitute for diagnosis/treatment, so please speak to your health professional for help.
I am quite jealous that you get follow-up! My daughter’s ASD was diagnosed by CAMHS, and once we had the report, that was it – they weren’t interested any more. Fortunately her school has been very supportive.
Hi, Rosie thank you for your comment. Bookasaurus was only four years old when we asked the GP to refer him so I think that’s why we saw a Paediatrician rather than going through CAMHS. It can certainly feel like you’re out there on your own, trying to work out the best thing for your child. That’s great that you’re getting support from your school it’s so important and I’ve heard from other mums that it’s not always the case.
Have you come across any services or sites that you’ve found useful? I’m making my way through the pack of info from the Paediatrician at the moment and once we’ve had a follow-up appointment I’ll write another blog so I can share anything useful that comes out of it. If I have a mummy moment and forget remind me!!
If you’d like to chat further please do use my contact form or e-mail me at jo@learningtoloveautism.com.
Mustard Seed (https://www.mustardseedautism.co.uk/) is great though not much use to anyone who doesn’t live within 10 miles of Farnborough! I just wish they were able to continue offering support into secondary school as my daughter will age out of it at the end of next year.
Hi Rosie, Mustard Seed is fantastic, I volunteer with them! Have you come across https://www.appeer.org.uk/ connecting autistic girls and women, it’s a Surrey and local area-based organisation, a good one to link into on Facebook too where they promote their events.
For info I also offer Coaching Support for Mums so if you know anyone that would appreciate a friendly listening ear do pass on the link. In the next few weeks I’m also going to be launching a Group Coaching Taster session, look out for the details coming soon or let me know if you’re interested by using my Contact form or emailing me at jo@learningtoloveautism.com. Thanks if I come across anything else will let you know.
Autistic folks often joke that if there’s a mild autism, it implies there is also a spicy autism – and other flavours!
It’s linked with a linear idea of ‘the spectrum’ rather than a mixing desk analogy.
As Papa Bookasaurus says, it’s unique – things vary infinitely, not just with the individual but the environment they are in and what they’ve previously experienced.
Imagine being very very sensitive to noise but living your whole life in a tiny village in the Himalayan mountains in total peace, no cars, no TVs, no radios. you might never know you were more sensitive and might consider you have only ‘mild’ effects and carry on your life without much trouble. But then imagine a thunderstorm happening , and how traumatic that might be. That might stay with you and manifest as a terrible fear of rain. And then the challenge of having to navigate life with the fear of being re-triggered by rain at any moment. The same person would then feel and behave very differently. So there are so many many layers that words like mild/severe/high/low
/spicy can’t adequately describe what people experience and how we can support each other.
Hi S thanks ever so much for your comment, it’s a different and perceptive way to see autism. I found the mixing desk analogy really helpful and in part 2 of my Easter Holiday and the Senses blog coming on Monday 16 May there is a little film which shows how it works.