What does a parent of an autistic child need to do/know

[Changingforthisone25]

Similarly to a recent thread about what a parent of an adhd child etc etc, is there anything that is particularly helpful for a parent of an autistic child to know.
I appreciate that when you know an autistic person you know one autistic person so what works cannot necessarily be applied but I feel all at sea following recent diagnosis and also worry about previous advice we followed that I've since learnt from following more autistic voices was possibly harmful if anything.
If it helps, our Struggles are around social communication and emotional regulation, some sensory. I see a lot of mention about OT but the kind of OT offer by us doesn't seem to relate to sensory integration at all

Hi op, how old is your child and are they verbal? x

Mainly you need to know your child very well and plan ahead for situations they might find difficult and do your best to mitigate them.

You need to parent the child you have and not compare yourself to others or worry about how they parent their DC.

Get saving! So many extra expenses.

You need to be aware that year 6 to year 7 is a difficult transition for many autistic kids and that if you need that supported by an EHCP, you should get started on it in year 4 due to tribunal wait times.

In my experience you can support a primary age child a lot more because once they're in secondary they don't want to appear different.

Do they have siblings? I don't have experience of that having an only but I imagine it could be easy for siblings to feel left out.

That's based on my experience of supporting an academically fairly able, sociable child who also has ADHD.

I would say the biggest thing to know is DC whose parents know the system and can advocate for them get better support. It shouldn’t be this way, but it isn’t going to change in the foreseeable future. With that in mind, it can help to read IPSEA and SOSSEN’s websites and the SENCOP to begin to understand the system and the law rather than unlawful policies LAs often have that are perpetuated by some schools.

Not all areas commission sensory OT on the NHS. Those whose ICB doesn’t and who don’t have an EHCP (which can include such provision even if their ICB doesn’t offer it via the NHS) would need to go private (or go down the EHCP route). If you look for an independent OT, make sure they have experience/training/qualifications in sensory integration. Not all do. If there is the potential you will request an EHCP, make sure they have SENDIST experience too.

For sensory needs, some people find the book the Out of Sync Child helpful. Depending on age/needs, you may also find this booklet, this website and the Occuplaytional therapist useful.

Sensory toys/equipment can help.

What support is the school providing?

OT and SALT can also help with emotional regulation and social communication. The school can also support this. For example, by Zones of Regulation, nurture groups, Lego therapy, drawing and talking interventions… For some, part of emotional regulation difficulties is the coke bottle effect. Where DC appear to be ‘fine’ at school (they aren’t really) and explode at home. If that applies to you, more support in school can improve home life. Some find the book The Explosive Child helpful.

Thank you @Supersares4 and verbal

@Needlenardlenoothank you for taking the time to respond, really appreciate it.
There are so many extra costs aren't there. The very specific clothes needed, different foods because safe food changes all the time, visual timetables to name a few.
They've told us to return in a few years if attention or hyperactivity appear an issue.
I'm going to start on an ehcp ASAP in the hope it makes home life easier too
Your comment reminded me about the need to parent the child you have in front of you not whp you expected or how others are approaching it

@StrivingForSleep
Thanks so much there are terms and resources I haven't even heard of here like Sossen and sencop. Re sensory OT then I think I may see if we can get anywhere through ehcp first. Looked as though even separately the school can access educational psychologists.
I was able to see your comment while writing but it's gone . There was lots I planned to respond to but particularly what you said about a child struggling at home will be struggling in school, it's just not been noticed yet. I really needed to hear that today, I can't help but sometimes feel that it's something about the home life and us as parents when school say they don't really see it although based on info they provided for the assessment there are signs emerging. The school do zones of regulation and there are ear defenders available for anyone but I can't see my son having confidence to approach for those. Senco also provided odd social story.
I do follow the occuplaytional therapist and love her content and will absolutely read explosive child, I've heard that mentioned a lot.
I'm really humbled by everyone taking the time to reply from busy lives and I imagine some hard won wisdom.

I agree about knowing how the various processes for support work (medical diagnosis and NHS support does not guarantee support in school) and being willing to be a squeaky wheel. Don't be afraid to say that you know what is lawful and what isn't, and where you disagree with what professionals have said about your child and why. I felt one thing the diagnosis empowered me to say was, "that won't work for DS because of (reasons), can we try x instead?"

I would never assume that information is being passed around within an institution even if it should be. If there are things that help your child on a day to day basis, write up a short bullet point document and give it to their class teacher. Do this every year. I worried a lot at first about being pushy and taking up people's time, but actually if you arrange meetings and offer resources, teachers I've worked with have been grateful. You may also not realise how much you already do to accommodate, especially if he's your first child. I was using my DS's name and waiting for attention before asking questions/giving instructions, long before I realised it was an ASD technique.

In the long term, where its possible for the child, helping them to advocate for themselves and meet their own needs is really important. How much they can do this will depend on lots of things and will vary situation to situation. But you mentioned ear defenders and if they won't ask for them, will they take them if offered? Would it be better if they had their own labelled pair no one else touched?

I also second SALT assessments and provision even for verbal children. Finally, it's really tempting to feel like you need to do everything now - SLT, OT, therapy etc. it's ok to work on some things and let others go for now. The EHCP is really vital though - so I'd make that the first priority.

Are you claiming DLA?

IPSEA and SOSSEN are a charities who support families who have DC with SEN.

SENCOP is the Special Educational Needs and disability Code of Practice.

If you are ever unsure of a term or have a question, don’t be afraid to ask. Learning about the system is what will help you and DS.

In the current climate, unless there are significant difficulties at school, an EP assessment via the school or LA outwith the EHCNA process is unlikely. Even if there are significant difficulties, a lot of the time it is unlikely.

I would request a meeting with the SENCO.