To be at my wits end :( ASD toddler

[Sandlesinthebin]

Our 18 month old DS has autism, he's not yet diagnosed but every health professional we've seen has confirmed he fits the criteria. His dad is confirmed ASD as is his half sibling on his father's side.

He has extremely little understanding, no interest in other children, a repetitive obsession with spinning wheels and no imaginative play. He is non verbal, never clapped pointed or waved and has the most heartbreaking meltdowns every day where he aggressively smacks his head and face on the laminate floor, our legs, anything he can bang his head off he will do it. He regularly gets a bruised forehead despite our best efforts to prevent the meltdowns and then I worry people will think he's being abused!

My heart is breaking for him and I'm at a loss as to what I can do to make life less stressful for him. The health visitor has assured us she will be making the referral for a paediatrian when she sees us later this month for a review, but it's likely to be some time before he actually gets any help.

We secured a referral earlier in the year via a speech and language therapist but this was then rejected based only on the fact our GP was based in another borough, ridiculous and so back to square one.

I feel so overwhelmed.

Please tell me it gets better?

No advice but bumping for you, maybe also try the special needs board? X

Some play centres have sensory rooms with asd sessions - he probably love that. Look up sensory tent - they are dark with lights in them. Toy wise he may love things with lights.

Ask HV for SEN toddler groups referral. Contact likes of National Autism Society they may have links for groups.

It does get better but why the health visitor can’t make the referral now? I’m sorry but we had to push really hard to get a referral for ours, then HV claimed she couldn’t do it( she was a lying useless cow).

I was also told that there’s no point in child being diagnosed earlier as they get help when they enter the education system( that also turned out to be bollocks)

DS is 5, was diagnosed at 3 years old. Recently we attended some workshop group after me complaining that there is NOTHING for preschool children.
The workshop group was attended by 2-3 year old children and their parents. Again too little too late. So annoying.
Wishing you best of luck OP, you might get more help at SN board

Yes it does. I do find, however, that as we overcome one obstacle, another appears … but you get more used to dealing with them. We never used to be able to take DS anywhere: we had an awful time abroad once, just before we were first advised he may have ASD, and we couldn't go anywhere. We would sit down for a meal and he'd scream. Go into the hotel lobby and he'd throw himself on the floor, banging his head on the stone floor. Screaming for no apparent reason. He was 2yrs 3 mths at this stage. We were lucky in so far as diagnosis came pretty quick (this was 9 years ago). Our DS needs heavy pressure applying to his body: we gently and firmly squeeze his head, his shoulders, I firmly rub his back, and he has a weighted blanket - when he has an episode I wrap it around his shoulders and it helps calm him. I also have a bodysock for him - blanket and bodysock readily available online. Both help massively. I think your DS sounds as though he's seeking out firm pressure but doesn't know how to get it.

I'm so sorry things are really hard. I was a carer for a nonverbal boy with ASD, and while he was older, he required a soft helmet to protect him from head banging. Also, his fave toy was his balance bike turned upside down so he could spin and lick the spokeless wheels without getting hurt. If he is getting up crazy early (which many seem to), a melatonin prescription from GP may help.

Helmet is like this: www.amazon.co.uk/HeadProtex-Helmet-offering-protection-injury/dp/B06WLGV4PK/ref=asc_df_B06WLGV4PK/?hvlocphy=9045716&linkCode=df0&hvptwo&psc=1&hvnetw=g&hvadid=309858036128&hvpone&hvlocint&hvpos=1o2&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforu03-21&hvtargid=pla-700364448661&hvrand=5551095202782537223

It does get better.

My DS is now 6, but we had a similar thing when he was 18 months old - and younger. The headbutting - oh, I judged myself so badly. He would hit his forehead so hard that he burst blood vessels. The screaming - my neighbours reported me to SS because of it. Thankfully it didn't go anywhere (actually, I was a little surprised, I shut them down on their first call and never heard from them again, I would have thought that me simply denying it (and telling them to tell their informer to do one in no uncertain terms) would not have been enough but I never heard from them again - never spoke to the neighbours again either...).

It took time, and an excellent preschool, but we got there in the end. He was referred when he was 3 and diagnosed at 5. The doctor who referred him was so dismissive. We went into the surgery and DS1 played reasonably nicely with a box of toys. I poured out my woes, cried, gave her a letter from the school confirming their thoughts etc. She looked at DS and sniffed and said that she couldn't see it herself. So I got up to go. DS didn't want to go so threw a massive tantrum which lasted ages.

We got the referral...

It takes time, and it's not easy. Look into different sensory things that might help - weighted blanket, sensory room as someone else suggested, if wheels help then make sure he has them as they will keep him calmer, maybe look into a padded helmet if the head banging thing really worries you.

Also, pick your battles. My son has issues around food, and so has a limited diet (mainly of fish fingers!) but I figure: better that he eats a limited diet than trying to push him to try new stuff and for him not to eat at all. Slowly, slowly we are widening the range of food - in the last year he has tried, and liked, jacket potato with beans, margarita pizza and plain wraps with chicken. He is also obsessed with sweetcorn so he has that with nearly every meal! But better that than fighting to get him to eat. We also always eat off trays on our laps - not ideal but better that than an hour's meltdown because he doesn't want to sit at the table.

He's 6 now, and in mainstream school, the head banging has more or less stopped unless he's in a really bad place, and I am much more able to see triggers before they happen, or at least know why he has got upset etc, and can try to put it right.

Sorry this is a bit waffly, but I was you (apart from my son is the complete opposite of non-verbal, he spoke very early on and his vocabulary is excellent (although these days revolves mainly around the words poo and bottom - he is 6!)) a few years ago and I just wanted to say IT DOES GET BETTER.

You will have to fight and be prepared to be fobbed off and fight some more, but this too shall pass.

Good luck...

It does get better. DD still has screaming meltdowns at 4, but is better able to indicate what the problem is.

Can you keep an ABC chart? If you google for "NAS ABC chart" the first item should be a PDF of an example. We're using one at the moment to see if there is any particular trigger for meltdowns to try to avert them before they happen.

We were referred through the health visitor rather than the GP and it was a lifesaver. I don't know where you are, but here there is loads of EYFS stuff for autism - if you are lucky enough to get an early referral and know where to look.

Are you anywhere near London? If so I can direct you to some resources. And if you are anywhere in the south east try the Thames Valley Adventure Playground. They accept children who are referred as well as those with a formal diagnosis.

Could you look at getting some soft rugs or those foam mats for the floor? Won't stop the head banging but might soften the impact a little for him.

I’m not sure it necessarily becomes better, more that when you know what your dealing with you become better at dealing with it.

I would suggest looking for things like parent Carer forums locally. Make connections with people who really do get it!

My tips:

You will have the greatest impact on your child's wellbeing. So ask for your referrals to professionals, but never wait for or depend on them to address issues at home.

Join local autism support groups to spend time with other families in similar positions. This can help you to avoid isolation and build relationships for possible child care swaps with 'autism' friendly families in the future.

Join the 'Ask an Autistic' group on facebook to learn about autism from our perspective. Avoid the negative, offensive, self-pitying trope peddled by 'autism moms' and presumptuous observations made by neurotypical 'experts'.

Ignore parenting advice designed for neurotypical children, it probably won't work, and could cause harm. The most significant thing you can do to help your autistic child is to always stay warm and calm. Practice this until you've perfected it and you will have learned 99% of what you need to.

Print out a little folder of info from the NAS website to begin with. They have a simple help sheet on self-injurious behaviour. But try not to over-research, it's a very emotive experience in these circumstances and it's easy to become overwhelmed.

Apply for DLA. It isn't means tested and you can do it before a diagnosis. Get help from a specialist to fill it in. You can keep a copy of his award in your purse and use it to secure accomodations when you're out and about, e.g. to jump queues, which will make a big difference.

I'll come back with more.

Thank you so much for the kind and detailed responses. I really appreciate the perspective from other mother's who can relate, and people with ASD themselves. I've taken in everything you ladies have said.

One of my biggest fears was highlighted on the thread and that's the potential for us to be reported to social services because of the head banging and wailing tantrums that last over an hour. Fortunately, the health visitor has had concerns about ASD since he was 12 months old so I don't think she would ever think anything sinister as she knows him and his temperament.

We live in S.E London so any pointers for resources would be fab, preferably resources who don't mind where your GP is located. I don't fully understand why that's an issue but it's something we keep coming up against. I don't want to change GP's as it's our family doctors, they're brilliant and know us all well.

A quick Google search came up with a great service but the sticking point being they only take on and support after the diagnosis has been made officially which is disappointing.

We were under kalidoscope in S.E.London for all of one appointment then discharged when we told them our GP was in another borough, so that voided us for the support we could have got via them for example SALT, paediatric referral etc. They were recommended by the HV but she wasn't aware the GPs borough would be a problem.

I'm going to look into weighted blankets and protective helmets for when he's having a meltdown. Usually I will try applying some pressure to his body by holding him tightly and soothing him but it rarely calms him down and I end up being headbutted

It's very difficult to get out and do nice things as a family because once he's out the pram he just wants to run and run, this is an issue for two reasons the first being safety and the second is because he has tibial torsion and another condition which means his feet are bowed so he always falls over.

Any attempt to encourage him to focus or take part in any activity were doing results in him shrieking and kicking off until we're forced to abort the day out.

We attempted the zoo and sealife the other weekend and it was disastrous.

I love him beyond words but it's so so difficult sometimes. I feel sad for him because of all the opportunities he misses out on because his condition makes it impossible to do and enjoy things like neurotypical children.

I wasn't aware we could claim DLA for him prior to diagnosis so thank you for clarifying that we can.

It's quite isolating at times because I can't take him to the park and socialise with other mums in the way that mother's of NT children can. I find that when I do take him to the park he just wants to stand and swing the gate for an hour and avoids the other children like the plague. If I try to encourage him to join in with the other children or do something different he'll have a huge meltdown and this is often met by a disapproving look from other mums there.

I would absolutely love to find a group solely for ASD children where he can be himself In the company of others just like him and we don't get judged because his behaviour isn't considered 'normal' to parents with no experience of ASD.

Despite his difficulties he's a wonderful little boy and brings me so much joy, I just wish I could take all of his suffering away from him as I know a huge part of his tantrums result from not being able to express his emotions properly and let us know how he feels

I've found this guide for DLA absolutely invaluable when I was applying for DD

www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

And we got a lot of help through the Early Start SEND Inclusion team, which our health visitor referred us to. They also have Specialist Health Visitors who specialise in autism who again were really helpful. Can you speak to your HV to find out if there's anything similar near you?

Hello :) I've two with ASD and you sound quite near me (we're under Kaleidoscope) - feel free to PM me what borough you come under in case I can help, as there's so much going on locally for us. Big hugs, it's so hard - especially these early days where everything's uncertain, you don't know what strategies work & you haven't found your "tribe" of like minded parents yet x

I wouldn't try the zoo or Sealife even now with DD. Just too peopley, too noisy, too unpredictable, sensory hell.

The Transport Museum does autism friendly sessions: www.ltmuseum.co.uk/learning/families/sen

As does the Science Museum
www.sciencemuseum.org.uk/see-and-do/early-birds

How is he with sand and water? Coram Childrens Fields is good if he likes that - DD at that age would spend ages just with the sand. Message me if you fancy a day out there or at Thames Valley Adventure Playground.

Have a look on Amazon (or somewhere) for books by JM Worgan - amazon.co.uk/Spectrum-Preschool-Years-Getting-Support-ebook/dp/B009JA2032/ref=sr_1_1?keywords=j+m+worgan&qid=1562265749&s=books&sr=1-1]]
There's a bit in this one about how her son was fixated on hitting his head on things and she talks a lot about practical stuff they did i.e. sensory toys etc. to help him. You might be able to get some good ideas out of it and at least you'd see that you're not alone. She's done a second one on when he started school & how he was coping too.

My ASD nephew is in South East London. In his case, Sunshine House was really helpful - no idea if it is still there. (He was 2-3 at the time, but is now 11.). He also had an EHCP at preschool (Dulwich Woods?) and that funded a one2one for him. They had 'SEN Advocate' which they had to pay for, but was fab at helping get the EHCP so young.

East Dulwich Forum (website thing) may be useful if near you.

To be honest, I think it would be much better if you move at least his doctors to a local surgery - it’s all to do with funding. I know that you like and know the doctors there, but most surgeries will have at least one good doctor and it’s really important to access help for your DS as early as possible. Just ask local friends for recommendations

Is your current doctor far or just in the neighbouring borough? I’m surprised they kept you on their list when you moved out of the area

I am not sure if this is helpful OP but anyone can ask their local authority to undertake and Education, Health and Care Plan assessment. Parents as well as health visitors, GPS, teachers etc can make the request. Also plans are supposed to be ages 0-25 so you could ask for one now that might make sure support is in place when he starts nursery. www.ipsea.org.uk/asking-for-an-ehc-needs-assessment
Good luck

Look on Amazon for a book called 'Coping with Autism' by Sarah Ziegal. She has 4 autistic sons and I suspect something in it will resonate with you and hopefully offer some coping strategies for both you and DS.

My son is ASD, he is 12. He is not as severe as your child at all, took until the age of 11 to convince relevant people to assess an then diagnose. I can remember even subtle things when he was younger that made it hard for me to join toddler groups and even I felt isolated. Please persevere with an official diagnosis, I also dodo a CACHE/NCFE L2 certificate in understanding Autism. I found that it really helped me understand the condition, how it effected me and how it can be perceived by others. It has certainly helped me deal with things more productively now I have a bit more understanding myself.

All the best, I'm sure your doing a fab job.