Parents of autistic kids: things u regret most & you would advise otherwise

[Soumia]

Dear mums or brave mums

It is a tough job to be a mother for an autistic kid...especially if you have more than.1 child on the spectrum; I have 2 who keeps me 24hrs/7 busyyy and I love them

In this thread.lets share our experience of the mistakes we did and we would advise other novice parents to avoid.

My kids are quite young; aged 4 and 5 and were diagnosed just last year.

My mistakes are:

I didnt take much videos of them when they were very little...so I could track back their behaviour/progress.

I have always been doing all the hard work with them and still...i think I should accept helpers...the more they are used to me as their 24hrs/7 carer the tougher is both for me and them. Recently i involved fxmily members :)

I never took any break since their diagnosis...again it helps to have a second carer...your sister...relative...a close friend ..etc to create a balance.
I have resprted to the option and it helped a lot :)

Networking and joining parents groups and not just listening to the so called "professionals"...
Parents are sometimes more experienced and can provide excellent advice...

Ds is 15 and was diagnosed last week. My biggest regret is not pursuing a diagnosis for him earlier. This late diagnosis has caused so many difficulties for him. I think we realised that Ds was autistic when he was about 7 but he seemed to just about cope. We made a mistake and now he is having to cope with a diagnosis in his gcse year.

I was also completely naive in thinking that the diagnosis may actually help provide some support. The only support the paediatrician could offer last week was a few leaflets and advice to give him a book about asd. She wouldn't even see him herself to tell him about his diagnosis. I was completely mistaken into thinking that there might be a bit of help or a follow-up for an autistic teenager who is struggling with life, unfortunately as far as the NHS are concerned there is nothing.

I have 2, DD(26) and DS(6). My biggest regret is with DD. We didn't know she was autistic until she was 15. As a result I feel I wasted a lot of energy and caused a lot of pain to both of us by trying to change her, to shape her into a 'normal' child. We've been much more accepting of DS as he is and working round that. I do feel that I let DD down. Although she thinks I did a good job and that she's only a successful professional because I didn't 'allow' her to be autistic.

I regret not remaining calm when DS's nursery raised concerns. I so wanted to believe he struggled because he was only just turned three years old and had never been in any childcare setting so it was all just unfamiliar to him. I wish I'd realised that actually, as there was a special needs nursery attached to his (mainstream school) nursery, the staff there knew exactly what to look for. They were very very gentle with me, very kind, and they actually put in place everything they would have, had he been diagnosed - he basically had a one to one for much of the day, he was very well supported. But it wasted so much time for me in the end - because when he went to reception, at a different school, they did observe some issues, behavioural mostly, but didn't consider he was on the autism spectrum (we were concerned ourselves by then and asked; we sought help from our GP, but because school wouldn't see any problems we were stymied). It wasn't until year 2 that school itself raised red flags, and a year later he was diagnosed, by which time he was really behind, academically. I feel if he'd had his ASD diagnosis a couple of years earlier, then he might also have had his ADHD diagnosis earlier, maybe at 7 or 8, rather than now he's 10. Starting medication has really helped and I wish he'd had that in year 3 or 4.

So I'd advise people not to delay, and if help is offered or suggested, grab it hard because it might not be offered later.

I also regret having the expectation/belief that DS's school would be honest and that when they said they'd do something they really would. I wish I had pushed and demanded and reminded and been cynical, and not trusted.

And I regret not pushing for EHCP needs assessment a lot earlier than I have. He still hasn't had it and secondary school is approaching like a freight train. Recent SaLT and OT assessments, however, have uncovered a range of issues that require intervention, and I cannot help but feel guilty that these should have been known and addressed, and DS supported.

Yes I agree with MrsMartin, don't delay. Ds's reception teacher told me when he was four years old she thought he was 'different'. Eleven years later he has been diagnosed. That's eleven years without any support at school (apart from the last six months).

Not listening to ds2 when he said he hated school. Took us a ridiculously long time in hindsight to hear that & take action.

To repeat the above...not seeking a diagnosis earlier. We ummed and arrred for 3 years and it wasn’t until we hit a crisis that we got our shit together. I look back with so much regret about this...all the mistakes we made ☹️

Also - SALT - even if you think your DC doesn’t have speech and language needs - they may do but you’re not able to see them.

Speaking slower and repeating myself!!!! Despite lots of advice to do this we’ve only really recently implemented it and wow - what a difference. Also for me the mental switch from feeling ignored to knowing she just does not understand me and is processing slower makes it easier for me (IYSWIM).

Don’t resist having a break. If grandparents want them to stay over have faith in them to cope.

Oh and lastly....

Do not be afraid to be “that mum” at school. I realise the school never really looked into my child’s needs as I wasn’t pushing for it (and always felt it was all my fault). It wasn’t until I repeatedly asked for an education psychologist assessment that we got it.

I’m with others who regret not seeking a diagnosis earlier. Our problem was that our dd presented ok in school but we had massive problems at home. We spent years assuming it was our parenting and not realising and understanding why the usual parenting/discipline techniques weren’t working. We only sought a diagnosis when she was 10 due to her starting to fall apart at school too and then self harming. She was diagnosed at 11.

Definitely do t be afraid to be ‘that parent’. It’s not in my nature to be pushy but I absolutely had to be during her diagnosis process. We were bumped from CAMHS, community paeds and clinical psychology, discharged without our knowledge or consent do it was a real battle at times. When her self harming and school refusal was at its worst, I remember setting a whole morning aside to phone as many agencies I could think of to get her some help.

I would also advise to not to afraid of a diagnosis. Yes, schools should be treating children according to their needs, whether they have a diagnosis or not, but actually a diagnosis helps with understanding. It helps you as a parent understand your child’s behaviour (and takes the pressure off blaming yourself), it helps the child to understand their own behaviour (stops them blaming themselves) and others too (helps judgemental people to not blame your child or your parenting). We’ve found it not to be a label but a route to support, understanding, knowledge and power.

dont be afraid to be that parent. If you are not fighting for, and the ambassador for your child, noone else is going to.
Find groups for SEN parents. Build a support network of people that get it.
Adjust your expectations and activities. No point forcing autistic young children to sit quietly in cafes etc or do loads of social activities. Learn what you can do, and dont break your heart over the rest. It doesnt help.
Be positive about it. Look for the good points and there are often loads, as long as youre not using a neurotypical benchmark.
My children are wonderful people. They are interesting, creative, funny, clever, but they are not neurotypical and they are difficult too.
Apply for DLA

Branleuse, you summed that up perfectly!

Not ASD at our house but dyspraxia and other things that hang out like ADHD.

Be a velvet bulldozer. Don't take no as an answer, take it higher until some one listens and takes action. Check that action keeps happening (interventions can be documented in home school book)

Build your support. Enjoy your children for who they are and make sure you tell them/show them you love them.

Don't spend ages trying to make them eat what they don't want!! There are usually plenty of healthy foods they do like...ie raw carrots instead of cooked, meatballs instead of shepherd's pie, cherry tomatoes if they hate sauce on pasta.

Failing that, a special interest or an association/familiarity/good vibe with a food, can turn a hated substance into their favourite. Ds fell in love with mushrooms when we took him to Carluccio's (I think it has gone bust now) - after several meals of plain pasta, he watched his Dad eating wild mushroom pasta and tried a little bit..Now mushroom in anything is his favourite. His first interest in raw veg was after we called Raw peppers traffic lights and served them on cocktail stick like traffic lights.

I am loving this thread! Thank you OP and everyone for all your advice. My DS is five and I am just setting out on this journey. I already feel exhausted and demoralised by being "that parent" with the school, and feeling quite self doubting about it all, so reading all this feedback from others is so encouraging, thank you.

@KisstheTeapot14 what constitutes a velvet bulldozer?!? That's an amazing image!!

Seek help as early as possible listen to your gut.
I knew DS wasn't hitting milestones, he cried from birth couldn't be spun. He has a vestibular sensory dysfunction and possibly ASD.
I've had to keep him back a year. 😓
Dont think your overthinking and don't blame yourself.

@MapLand do join our Y1 thread if you would like to, sounds like your DS is the same age and we have reception and Y1 parents on the thread!

I also love this thread. Particularly the concept of a velvet bulldozer, and the advice not to try to make our children NT or using NT benchmarks but just helping them be their best autistic selves.

Learn about social stories. Buy the book or do a training course in it.
Game changer for autistic kids.
I haven't actually made any social stories but it was the single thing that made a huge difference to the way i spoke to them. The detail.

Great advice on here.

Listen to your child.
Don’t listen to the people telling you they’re being manipulative or pulling the wool over your eyes.
Listen hard to your child.

Yes to the velvet bulldozer. Push and push but choose your battles as you’ve only so much energy. Go round the immovable - there’ll be another way.

And yes to meeting your child where they are. They will be happier and you will be too. No point forcing a square peg into a round hole. That square peg is interesting in its own right.

I’d love to think I’d do things differently such as accept and seek help earlier but it’s been a difficult path to acceptance that couldn’t be changed or rushed. For me it’s been like a grief process and I don’t think me and ds 1 would be in the happy place we are now without the shitstorm that predated it!

When nursery raised their concerns I had every excuse under the sun (summer born, difficult year etc) but slowly the possibility that he wasn’t NT sunk in.

I suppose I wish I hadn’t constantly blamed myself as a shit parent from birth. He’s six now and we are in such a good place. He’s free to be himself, loves his friends and hobbies and has 1:1help secured at school. I’m seeing progress all the time. Last night he went to a sports club without me (taken by a friend and his mum). I couldn’t imagine being happy to let him go without me for fear of a meltdown even just 6 months ago.

Sorry for the midnight rambling!!

Some great points and ideas on here.

I like the idea of using social story language more. I will look through my books with that in mind.

Plz firgive my ignorance...but what is social stories??

www.autism.org.uk/about/strategies/social-stories-comic-strips.aspx

Don't appear too confident, too professional, too much like you know what you're doing. If you do, you'll get zero support from Childrens Services. They'll only offer help if you're a nervous wreck at crisis point - and sometimes not even then. So whilst you need to understand the education system, the social care system, the health system, and your child's disabilities in order to hold your own at any other meeting; do not demonstrate that edge when talking with social workers. They will form the opinion that you are coping well (even if you are not), praise you for it, walk away and leave you to it.

[/cynical]

I really didnt anderstand your advice...
Why is eberyone scared of socoal servies...????

Why shouldnt we be truthful and honest...

Why should we make an effort to appear in that way?

The whole point at the end is to help our autistic kids...

I dont know about dealing with social services as we are nor under them, but i do think confidence is necessary in most settings. Assertive but not aggressive.

Quite the reverse of being scared. Social services are a very over-stretched service and only have the resources to help the families with the most severe issues. It is not about lying but rather being honest about the difficulties you might be facing rather than using the default option of everything is "Fine" (or in other words everything is bloody awful but if I don't talk about it then I can pretend it is not). Social services do currently provide respite for ds2 - which is good for him (only social contact he has with his peers) and good for us to have a break - but we are at the borderline of their criteria (judging by the fact we have dipped in and out of their radar over the years) .