Advice please - 9 year old son with high performing autism

My son was diagnosed with Aspergers last year (formal diagnosis is ASD but the Dr told us that it is what would have previously been diagnosed as Asperger’s). My son was 9 at the time and the Dr told him that he has it at the diagnosis appointment and told him to focus on the positive aspects, his great memory, great maths ability etc. 

My son was totally accepting of the diagnosis and now tells me he always knew he was different to the other kids and I think he likes having it confirmed and learning more about the condition. Although my son is bright and was out performing his peers academically initially, he is now starting to struggle as the curriculum changes as they get to secondary and he finds it harder to access it now. Though I do wonder if that is partly due to his ADHD for which he was only recently diagnosed, and we’re awaiting a meds assessment to see if they might help him concentrate.

I suppose what I’m trying to say is that I think formal diagnosis can be useful, and just because he is coping in mainstream currently, it doesn’t mean he won’t need support in the future (or he may not). Wait times for diagnosis are so long these days that it can be frustrating if you need the diagnosis to get support for your child but have to wait to be seen.

NAS81954 said:

is there any benefit to a diagnosis for high performing autism (I can't see any)?

When I have written things like this it always feels all over the place when I read it back so to summarise:

- it can be a benefit to understand why you are different to those around you, especially when people can label you as something else to explain your shortcomings in social situations etc.

- I don't know how beneficial it is in terms of actual support in working on these issues since I am still going through the assessment and the only support I have access to is things my sixth form is kind enough to provide such as a quiet place to eat alone.

I can tell you from my experience as a teenager that I really struggled with not knowing why I had difficulty socialising with peers. I had always been fine before I turned 15* because I had been part of a small group of friends who all had autistic traits - occasionally I was outside of my comfort zone talking to other people but most of the time I just spent with these few friends - and once we drifted apart I began to recognise my social deficits trying to engage in other social circles etc. So from that point of view if you know you are different but can't seem to understand why then I think it can be massively beneficial in some respect for your mental health (certainly I would have taken knowing I was autistic over struggling with people behind my back labelling me falsely as a sociopath or a psychopath just because I didn't "fit in.")

On the other side, I wouldn't really know if a diagnosis would help with these social situations since I don't know what a diagnosis would entail in terms of support etc. While I have been getting assessed my current sixth form has been really helpful giving me a quiet space to eat alone and so forth but I still encounter plenty of difficulties with socialising at points during my day. Since I haven't yet been fully diagnosed I don't really know what support is available after diagnosis, for that you will have to rely on people who have already received that support to tell you. I don't know if a diagnosis would have helped me to work on my social deficits back in school but it certainly would have helped me to understand why I am different, to be succinct. 

* To be clear this could be quite confusing. I've always shown autistic traits since I was a kid (hence why I am being assessed now) but they certainly became much more obvious in secondary school. Thats not to say I didn't have difficulties socialising as a younger kid, but rather I was clueless most of the time to the fact I would be doing anything wrong. There are actually some quite hilarious examples too!

Hi,

This sounds similar to our situation, my son is 10 years old and you echo how I feel.  I didn't realise my son could be high performing autistic, neither did the school.  When I was discussing relationship issues between my son and me, his dad and brother, my friend suggested it could be aspergers.  When I looked into this more, it did seem highly likely.  I haven't spoken to my son about it and like you I feel ill equipped to discuss this when I don't know enough myself.  

This forum is probably one of the most useful places to gain insight and information for me.  

I did read a book called Freaks, Geeks and Aspergers Syndrome by Luke Jackson who wrote it when he was a teenager.  It provided some good insights and also may be something your son can read and relate to?

Regarding the diagnosis, I was also questioning whether it's beneficial and necessary and came to the conclusion it was.  However, like your son because my son achieves well at school and wouldn't assist with a referral and even if they did it would take years for an assessment.  I decided to book a private assessment which is in a couple of months, it's expensive but I'm hoping it will be useful and give us much needed information and support about any neurodiversity traits even if he isn't officially diagnosed autistic.  

The main reason I'm doing this now is because I want to make sure that we choose a secondary school where he feels comfortable and can get the support he needs.   I don't know if I could make the adjustments we need to without an official diagnosis, although we do it now as much as possible, it isn't easy and can be emotionally draining.  

I hope this helps, feel free to come back with any other concerns / queries 

The best single book I have found is, The Complete Guide to Asperger's Syndrome by Tony Attwood, despite its title, it is equally applicable to all autistics with low support needs.

Getting a diagnosis is important for all autistics. I am a former research scientist and have a passably good intellect, but getting a diagnosis at age 59 was very useful for me; especially for validating my experiences and explaining my difficulties throughout life. I took early retirement from my university just before my diagnosis, but, had I still been working, I would have pushed my employer for accommodations to make my working life less stressful.

My daughter was diagnosed at 19 and has received useful accommodations from her university, where she will soon be starting her third year of a chemistry degree.

This is my favourite article and I think the writer does a great job of explaining our role (the Autistic Human design) from ancient civilisation until now. autcollab.org/.../

Best advice: Never interrupt. Pre-design time frames. Be consistent and reliable with your words/actions. Precision, not B&W thinking. Give overly detailed instructions. Build trust, give respect. Build rational, reasonable principles and values and facilitate open discussion.

Download a decibel reader, frequency spectrum, take note of Volatile organic compounds in the house, buy natural fibres for clothing and look into: lightaware.org. Best bit I learned from my grandmother: very few things are matters of importance. 

If you would like to see some positivity about autism to share with your son when you feel ready I recommend a book called "The Power of Neurodiversity" by PhD. Thomas Armstrong. In his book he doesn't deny the difficulties, but he sheds light onto the gifts autism and some other disabilities bring, how we can create a better environment for them, and even goes beyond childhood to sharing which jobs they will have an advantage at, most of his book is about how we can better and more effectively educate children and emphasise on their talents to build confidence.

Concerning when to tell your son he's autistic, it doesn't seem long from now since he can sense there's something unique about himself, if he asks you why he's different that will likely be the time to tell him.

As general advice, make sure he maintains a healthy sense of autonomy and avoid what we call "masking" or "camouflaging" which is hiding his autism. Masking has been found having detrimental impact on mental health.

The only behaviours you want to be concerned about are any behaviours that cause harm to others or himself. Each behaviour often serves a purpose, like humming could be a calming mechanism.

If you look for YouTube channels about autism you'll find channels of autistic adults who can speak for themselves explaining autism, their experiences, and possible ways to help autistic children. Those of us autistic are trying to educate the general public about what it's like to be autistic, don't just listen to one autistic person though, listen to many to hear more options. 

Yes. Definite benefits from getting a diagnosis. We went private when son was in year 6. I applied for his EHCP,  he gets DLA and short breaks funding 

NAS81954 said:

- is there any benefit to a diagnosis for high performing autism (I can't see any)?

Yes. And it's far easier to get an assessment when some one is a child. When he hits his teens it's posable autistic behaviour may be misinterpreted as defiance or disruption. Teachers, even university lecturers or future employers, may need to make reasonable adjustments in the form of bending rules for him. It's far better to get a diagnosis before an autistic child's behaviour is viewed as a problem.

If your school is resistant to the idea of diagnosis try your GP.