Autism diagnosis- what next?

[MonsterRehab23]

DS aged 9 has just been diagnosed with autism. It wasn’t a complete shock but I’m still feeling very emotional. He is healthy, happy and making progress at school, I know it is not the end of the world. I grew up with an uncle who has autism, alongside other complex needs, so I have a bit of knowledge, or I thought I did.

For background: I always had niggles about DS since he was about 2. Concerns about his motor skills started from age 4 and he was referred to OT at age 7/8. During an OT assessment, observations about autism were then made- DS social awkwardness and mannerisms, cue referral, assessment and diagnosis over a year later- aged 9.

I’ve been given an after diagnosis pack to read but it’s making tearful and I burst into tears when picking DS up from school. He is aware that he was being assessed for autism but I don’t know whether to tell him or not? DP thinks not- he feels it won’t change anything.

Can anyone advise me what their first steps were? I’m planning to have a meeting with the school (when I feel a bit calmer) to discuss any extra support. We’re in Scotland so no EHCP and CAHMS weren’t able to give me much information about getting a care plan, or if I even should? He receives some extra support for social skills but I feel needs extra support with written communication. We also need support to manage his meltdowns and help him with anger, in particular. I’ve been given booklets on DLA but don’t know if he would really qualify.

I’m scared of telling wider family as autism remains a bone of contention, due to the misunderstanding and mistreatment of my uncle.

Sorry if this is long, I would be grateful for any advise from other parents, thanks.

We had an ASD/Aspergers diagnosis at 7 and an adhd diagnosis at 8. Ds was present for both and we openly discuss with him. School have been initially patchy, but recently superb. Tbf most of the positive stuff has happened since the last exclusion which was his very last chance and we went in and begged for help. We have found that discussing positively what can be done, doing our own research, asking for reasonable adjustments, staying positively and never making the school feel defensive worked. We have in place the following adjustments......,
He decided himself he preferred being in his own table facing the wall. For the last three years this is what he has.
I take him to his desk in the morning to avoid fighting and overload. I collect him 10mins early with his sister same reasons.
He does not go out usually for play. Apart from maybe 15 mins at lunch one to one supervised.
Lunch hall is a nightmare! He eats in the library or sensory space, with chosen friends and one to one. Lots of Lego, blankets, sensory lights, quiet.
He comes home in his PE kit.
I accompany him on trips
He can type rather than write if the objective isn’t to test handwriting
He gets additional support in the classroom where possible.
He is not forced to join in assemblies, plays etc

The point is we have suggested most of this, the school should be willing as it makes their lives easier! The sensory space was installed on our suggestion and is being rolled out to other children this year.

We have had problems mainly with violence, but also with disengagement. He is very bright, always top marks, but he produces very little. If he doesn’t see the point he won’t do it.

Apply for DLA. If you provide more care for your child than another of the same age you are entitled to. It’s not just about the money although ours pays for music lessons, swimming lessons, counselling, sensory equipment. You get additional support on days out which is necessary.

Push for an EHCP whilst in primary. You can go from absolutely fine to facing permanent exclusion in a term and no ehcp means no special school and possible behavioural unit. Get your ducks in a row before applying (go through the form, it lists professionals they expect to be consulted, get those reports done!) We find out tomorrow if our LEA will accept our application. I feel sick!

Join every local support group you can find. Get your allies behind you where you live. Find parents in the same boat. I have been bullied, threatened and eugh....... some school mums are just angry, uneducated, nasty pieces of work. Get used to it and grow a thick skin.

Have a damned good cry. Grieve. Get mad. Then dust yourself down because you have a very important role in your child’s life and you need to step up. Sometimes it’s the pits.

Holidays can be shit. We’ve come home early twice now.

And that’s it I think! I feel so much better now!

Apologies you said no ehcp. Make sure you can apply to special school if you need it.
Tell your family. What they do with the information is up to them. You need to be open, honest and strong. It’s hard enough without dealing with other people. Tell them how it is, what he needs and demand nothing less than absolute support. Some people need to experience it before they believe it. Been there......

Keep a diary record of events, things you notice, file documents. You need to learn his triggers which might change over time. Every time you spot one tell the school. If they can minimise his triggers you are winning! It’s hard to advise because they’re all so different.
Know you’re not alone op. But you will have to fight for everything xx

Thanks everyone all your advice is so helpful. Please feel free to vent.

DS’s main challenges are with his written work as his handwriting and spelling are so poor, however his reading is good and maths ability is very good. Like many others, he is a visual learner and can remember long numbers like his library card, yet he struggles with written sums as the workings have to be neatly and logically organised.

He is very well behaved in school- too well behaved. For instance, he wouldn’t tell his teacher about bullying because his teacher said she was tired of ‘tell-tales’, so he took this very literally.

At home his behaviour is challenging and DS takes a lot of frustrations out on us. He gets frustrated when I don’t say words in the right order or cannot give an exact answer, or if he thinks I’ve interrupted him. He really needs help managing his anger so this is something I need to pursue. I try and get him to breathe and tense his muscles but nothing seems to work. There is also a local ‘gang’ of young boys aged 7-14 that seem to have taken a dislike to DS, and DS growls at them, out of fear, which makes the situation worse.

He can be such a lovely boy but needs to work on his social skills- picking up non verbal cues in conversation. I’m pretty shy myself so I’m sure that doesn’t help.

I’m also supposed to be starting a new job in the next few months but my head is all over the place. The only person that knows is my mum who is brilliant. I’m nervous about telling my fathers family as they’ve had such a terrible experience with my uncle. I’m very grateful for all the advice here.

I have just read that it has been proved that Autism is caused by toxins I'll bite ... link?

Anyone worried about the autism DDT study currently being mentioned - here’s a takedown of the poor science/stat analysis behind it:

threadreaderapp.com/thread/1030116238175944704.html

Thanks @noblegiraffe.

@MonsterRehab23

The SN boards on here are the best online for advice and support. Try SNChat and SNChildren as they are the most popular. You can ask MN to move your post over there if you would like to. Report your own post and ask.

That stops people who know SFA about autism commenting with this sort of twaddle I have just read that it has been proved that Autism is caused by toxins, so many mothers tested for exposure to DDT

Nobody, repeat nobody can definitively state "the cause" of autism.

Fortunately, other posters who have answered you on here have spoken sense, but that doesn't always happen on the main boards unfortunately.

I’m nervous about telling my fathers family as they’ve had such a terrible experience with my uncle

Every person with autism is different. They respond to different stimuli and different triggers. Keep this in mind for awkward family members and other people with preconceived ideas.
When you've met one person with autism, you've met one person with autism

Thanks Blank Times I will ask for thread to be moved. I ended up breaking down in tears at work on my break, thankfully no one saw. All it took was one abrasive comment from the kitchen staff and that was it...

supadupapupascupa, thanks for the superb advice upthread. Getting DS a computer to write with at school would benefit him greatly.

I posted in SN and got zero response. Had to repost in chat!

Hi there everyone,

We're moving this to SN Children at OP's request. As this thread was started in 30 Days Only, if anyone who previously posted would like their post removed please report it to MNHQ.

A lot of parents don't know how to tell their kids the result of a dx without making them feel that different = bad, worse, inferior, when it should be that different does not mean any of that.

Can you find an anology that he can relate to?
A common one is that all computers can do tasks.
Most computers run on Windows.
Some computers run on Mac.
Windows and Mac do things differently, but they are both computers. and have their own strengths and weaknesses.

Also the Rebecca Burgess cartoon helps to explain that the autism spectrum is not linear, and an autistic person's 'place' on it is made up of an individual distribution of their strengths and weaknesses.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
That may also come in useful for your family.

The well behaved in school stuff is masking, my dd did that too and hometime, sometimes even before we got to the car was explosion central. As a parent, when you understand that it's the release of the effort of holding things together that leads to the behaviour, it becomes so much easier to deal with.
Aside from things done with plain simple instructions, school can be like an alien environment, you're there all day where you struggle to make sense of most of it as it's too loud and bright and teachers and kids do strange things and communicate in inferences when you can't understand.

@supadupapupascupa SNChat and SNChildren are the most frequented of the many SN boards.
Not all enquiries are answered, but enquiries that are answered are mostly by people who have had experience of that situation.
Often it's worthwhile reading back and finding out if there has been a similar enquiry and what the outcome was.

The disadvantage of posting on the main boards with an enquiry about SN is people with no knowledge of SN chipping in and the whole thing turning into a bunfight with disablist comments and the thread being deleted.

Thanks for the link Blank, very informative. Tbh even I thought of ‘the spectrum’ in linear terms until very recently. I’ve sent it to DP and a few close family members.

Well I mucked up. I tried to broach the subject of autism informally with DS on the way to school as I have a meeting with the school today. However he got very defensive and says he ‘doesn’t have it’. I don’t want to keep it from him but don’t want to cause him distress either.

You haven't mucked up - this was just the first tentative steps, planting seeds. Keep casually mentioning it over time.

Thanks ponygirlcurtis. The depute head teacher offered to help me tell him but I declined, for now. He doesn’t want to appear different from his friends hence his reaction.

Nothing to add but following and thanks for all the helpful comments

These articles might be helpful too autisticnotweird.com/growing-up-autistic-advice-for-teenagers-with-asperger-syndrome-or-mild-autism/ and [[http://autisticnotweird.com/when-should-i-tell-my-child/]]. Lots of other good articles on the site as well, definitely worth looking at.

They are great articles, magicroundabouts, really useful. Thanks for sharing them.

Monster that's good that the school are willing to help - having the option of them helping you with telling him is a good fallback maybe if he continues to not want to engage with the idea.

If your son is going to need support he's going to need to understand why he's getting it. My dd is autistic and knows that her "brain works differently" however she also has a learning disability so things have been a little trickier to explain. The latest power ranger movie had an autistic character in it which helped is you son too old for this? I also watched miss peregrines peculiar children with her to introduce a more exciting set of differences, she's thrilled to be "peculiar" I recognise that these may not work for your child but perhaps you can introduce the idea that everyone is unique to him and gradually tie this into his autism diagnosis?