My son has just been diagnosed with autism. Now what?

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DS is 4 and has just been diagnosed with high functioning autism. He's really struggled in lockdown and his behaviour now is extremely challenging with violent meltdowns every day. I suppose now I have a diagnosis I need to learn more about how he is feeling, what is really causing the meltdowns, what I should be doing to help him stay calm.

We had the assessment today and the Dr will be sending a full report within a week which I'm sure will have lots of resources and strategies. He wasn't able to give too much advice in the appointment because DS was quite hysterical by the end.

So in the meantime, I suppose what I'm asking is: what resources are out there to help me? As parents of a child with autism, what did you find was the most helpful in understanding and helping your child's behaviour?

I know there are lots of resources online but I really don't know where to start! And as it's such a large spectrum and everyone is so different, how do you know which strategies to focus on? I find a lot of the advice online is very broad and I really need some more specific actions. Are there courses you can go on? People you can talk to with specific questions?

Any help appreciated as I feel quite overwhelmed at the moment.

Hello, I think it's hard to give generic advice because it's different for every child. Things I've found helpful are having a clear routine; warning of any changes to the routine; giving plenty of warming about transitions; trying to make transitions positive eg now it's time to go up to bed what toys shall we put in the bath?

For anger and tantrums, I've found it helpful to take a step back and trying and figure out what the trigger is. Sometimes putting it into words can help. Eg I think you are feeling angry because you really wanted to go outside and now it's raining you feel disappointed.

Talking about emotions has been helpful, we have a book about emotions. We also use zones of regulation - look it up, basically you have four colours which represent different emotions. Sometimes when I lose my rag, DS says mummy you are on red! . It helps me calm down too!

Good advice from HotPenguin.

Google your local authority and ‘local offer’ to see what’s available in your area. Ask the doctor if there is an EarlyBird-type course that you can be referred for.

Is he starting school this year? Do you have an EHCP?

Try to keep an ABC chart to identify the trigger for his meltdowns. This is a stressful time with normal life still mostly suspended so it will not be helping.

There are lots of good books you may find useful e.g:

Autism & Asperger’s syndrome in children
how to raise a happy autistic child
uniquely human
Talkability (Hanen book) is for verbal children on the spectrum
the explosive child
the out of sync child

This is a good resource on sensory issues: www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201906271131

I found the early bird course really helpful. Your doctor may be able to refer you. I also agree with having a routine and maybe a visual timetable. Lots of warnings before a transition and if you are doing something different lots of discussion beforehand.

www.eventbrite.com/e/managing-your-childs-diagnosis-tickets-112383596362?utm_source=eventbrite&utm_medium=email&utm_content=follow_notification&utm_campaign=following_published_event&utm_term=Managing+your+Child%27s+Diagnosis&aff=ebemoffollowpublishemail

This event might be helpful.Corrina Wood who is running it has a Masters in autism.

Hello op, I echo hot penguins advice about routines and warming ahead of transitions.

My list of strategies to try would include:

A visual timetable, go through it at breakfast time, lunchtime and dinner time . Recap what you already did and what's coming next.

Keeping a diary - someone up thread mentioned an ABC chart - just try to note down and observe time/situation of difficult moments. Also add notes of times when your child seems relaxed and happy, and what the situation is.

Special interests - these are invaluable and can be mined for treasure - make a list of your child's special interests and go to town together on them. Eg if he loves bin lorries, you can paint them, build them in playdough, make the sofa into a bin lorry, start a log chart with stickers so you log every time you see a bin lorry etc. Special interests are relaxing and safe for your child and give you wonderful ground to connect on. Use them to distract during moments of stress and anxiety. Get your phone out and google images of bin lorries.

Sensory diet - start reading up about sensory profiles and input. The Falkirk guide above is great. Work out what your child craves and schedule it into your day. Eg trampolining, running around outside, deep pressure with a gym ball, water play, blowing bubbles. My experience of sensory stuff so far is that it can be a game changer, especially when you find the right intensity and length of the input needed.

Find a trusted babysitter and commit to having one night a fortnight out with your partner/ friends/family. This is one I'm advising because I haven't been able to crack it and I'm feeling the pinch! Supporting an autistic child can be wonderful and rewarding but it also takes a lot out of yiu. You need to refuel.

Good luck

Thanks everyone. Some really good advice and resources here and I'm starting to get some idea on some next steps.

It's amazing how everything I read makes so much sense in understanding DS's behaviour. All this time I feel like everyone's been judging him for being spoilt and having tantrums, whereas I've always felt it's more about him getting overwhelmed and having a meltdown because he just can't cope. At the same time I never thought he was autistic, because he didn't seem to 'fit' the criteria. At his assessment I realised how so many of his behaviours which are so normal to me because I've been with him every day of his life, to someone independent and experienced were so obviously signs of autism. Of course now I feel incredibly guilty for not making the connection earlier.

I still don't feel I really understand his triggers but at least maybe now I'm on the right path.

I have one other question for other parents. I have a daughter who's a few years older. Recently days out, parties, holidays etc have become really difficult due to DS's needs and behaviours and DD is really suffering. Part of me wants to take her on her own, so she still gets to have fun, and because often DS doesn't even benefit because even if we have a good time for a short while it inevitably ends with a meltdown which is just as traumatic for him as everyone else. But DS would be distraught if I left without him, and it seems cruel to exclude him. So to those of you with more than one child, how do you manage things so that both children are happy?

Hi there, in our family it is the older child who is on the spectrum and the younger child not, so it's a bit different. For parties, do you need to take the younger child? Can you drop your daughter and leave? Parties for us are a guaranteed nightmare.

We do holidays but we avoid loud, noisy places. We take DS own duvet and lots of toys so he feels at home. My DS loves steam trains so we often take a steam train! Headphones have made a big difference in helping my DS deal with loud places.

You may find that as you work out how to deal with your son's sensory needs and avoid stressors, he becomes a bit more flexible. My son is much worse at times of change and uncertainty, sometimes when things are good we almost forget he has autism, and then we mess up big time and have a huge meltdown situation. It's a learning curve!

My ds is 4 too and has recently been diagnosed as ASD.
It's really hard to know ehere to begin as it is all overwhelming, and realistically, nobody straight off can say to you 'this is how your son is and this is what you need to do'
It's a learning path for sure. I'm finding keeping a journal helps, maybe 2. One for you, to ramble, and vent. The other for you to keep, specific to your ds. Try and build sections, ie Meltdowns, Food, Calm, so you can build a picture as to triggers, or how you managed to calm him down, or how long it took. It's so hard to see or think clearly when in the midst of it all, so get prepared in advance if you can. Shove a bit of paper on the wall or fridge and each time there's a melt down, just scribble, when it started, when it finished and how he calmed. After a few days I was able to see what had been very obvious from the start, but I'd been so caught up in the stress of it all, I was literally just being reactive.
I'm not one for gimmicks at all, but an advert came up on FB for a sensory net swing. It promised to deliver a much calmer, and more focused child. The reviews seemed really positive, so I jumped in and ordered one. I was really skeptical, as usually when my ds has a melt down, he runs away, throws things, or kicks and punches. I just couldnt imagine him getting in this net contraption.
It arrived and my ds was in a good mood so hoped in straight away, and the look in his eyes was incredible. He instantly went all dribbly, and relaxed, and he kept making little noises of delight. To me the net looks really uncomfortable, but bizarrely, it holds the child and applies pressure in a really lovely way. It doesn't matter whether your child is a sensory seeker or avoider, or both, It apparently still works. Now if he gets distressed, I pop him in the net swing, and he sits in and swings for a while. Instantly calmer.
I too dread parties. My DS likes the idea of them, but just cant cope whilst there. His ds is almost 3, and not ASD, so I haven't hit any problems of being unfair on her yet. But I'm sure it will come. My DS certainly sets the program and gets very overwhelmed after 60-90 mins, so I always have to get home after this time.
It's really tricky, as with ASD, no 2 children are the same, and it effects them all in really different ways. I've been finding that info out there is very typical, and not always relevant to my ds, so like you can find it overwhelming. There are some really good books out there, but at the moment, by the time my kids are asleep, my brain is a jelly.