Actual therapies for possibly autistic child

[FloorWipes]

My DD is 7 and has been having difficulties from the start. Initially this manifested as hyperactivity, constant dysregulation and problems with eating and sleeping. She has always been sociable and her speech is fine, but she has anxiety, huge sensory issues especially with touch and a behaviour profile that is closely aligned with PDA. Currently she struggles to wear clothes, eat properly and attend school. We are currently somewhere within a slow neurodevelopmental assessment process and the paediatrician who referred her into this thinks autism is likely.

But whatever the diagnosis, she is seriously and urgently in need of therapies, especially to manage her sensory issues, but really for everything. No one should live with the level of distress she experiences in a given day.

Beyond diagnosis, and aside from school based support, what kinds of actual therapies are there and how does one gain access to them? For example, my reading suggests that an evidence based therapy that would apply to her would be sensory integration therapy, but does the NHS do this? What else is there? What has helped you? How did you access it?

Thank you.

Before replying fully, what country in the UK you live in. I ask because that will influence answers.

Scotland. Thank you.

Not all areas commission sensory OT on the NHS. Even where it isn’t, some manage to secure it via education. Others fund it privately or look at charity funding. Lots fund sensory equipment via charity grants.

‘Normal’ OT can help too. For example, it can help with emotional regulation, interaction and executive functioning difficulties. It can also help with motor skills which some autistic DC struggle with. More people can access this support on the NHS than sensory OT, but the offer can still be quite limited and some look to secure it via education, privately or charity funding,

SALT will also be helpful. The scope of SALT is wider than many realise. It is about far more than the physical ability to speak. The NHS offer is often limited and the end of my previous paragraph applies to SALT too.

It sounds like DD needs some therapeutic input for her anxiety. There are lots of options. From the traditional therapies such as CBT, which aren’t always helpful for DC with autism even if it is adapted, to therapies like animal-assisted therapies or art therapy. Then there are things like MindJam rather than normal therapies. Some people manage to get support from CAMHS. Lots of areas have charities etc. who provide counselling or therapies to DC. Although these can sometimes have long lists.

Things like rebound therapy, horse-riding/hippotherapy, hydro/aqua therapy can be helpful to many autistic DC. They can help with regulation. They are also helpful if DC have any co-morbidities such as hypermobility or motor difficulties. These can sometimes be funded via education. You could look at Riding for the Disabled for horse riding. There’s charity grants that can sometimes help too.

Does DD take anything to help with sleep?

For the eating difficulties, have a look at ARFID.

For educational support, have you looked at Enquire?

Thank you this is very helpful.

So far from OT we have only managed to get advice over the phone. It hasn't been the most useful. It's been a combination of things we already do because they make sense (like trying to find comfortable clothes) to things we are not able to implement ourselves because DD wouldn't accept them or things that feel far too complicated to implement when we really don't have the expertise. It's been frustrating. No sessions offered, nothing face to face or involving DD directly, and I'm not sure any face to face sessions exist or if they do what would be the threshold to access them. It's really unclear. I get the impression we will have to access this outside the NHS, and probably privately.

I'm sure I don't really understand what SALT do. As far as I can tell DD is a good communicator, although she can be selectively unresponsive and sometimes needs a bit of time to process information. And her emotional regulation isn't the best. So perhaps there is something there.

I feel like DD is probably a bit young for CBT but some sort of animal assisted therapy is something at least that she would welcome. Mindjam also looks interesting as she does like video games and I think they seem to have quite a positive effect on her. We take her swimming a lot because the water also has a positive effect so maybe aqua therapy is also a shout.

We have obtained melatonin but for various reasons we haven't used it yet.

I will definitely look at Enquire also.

Thank you so much.

For sensory needs, you might be able to find what the NHS in your area offers and what the referral criteria are. But there may not be any F2F sensory OT support. Some areas don’t offer it at all. Some find the Out of Sync Child book helpful. There is an Out of Sync Child has fun book too. It is also worth looking at this document and some of the Occuplaytional Therapist’s resources useful.

SALT can help with social communication and interaction. It can help with things like emotional regulation, non-verbal communication and receptive language. If it is suspected DD is autistic, SALT will help. However, the NHS offer is often limited.

For some DC, CBT can be used at 7. For others, it can’t.

Sorry you’re going through this. This sounds similar to what we are navigating, pda, autism, sensory differences, anxiety. I would say it sort of depends what you think your child can manage at the moment, in terms of engaging with different adults, new places, etc. Are they in burnout, or close to it? The high level of distress might suggest that.

We’re waiting on clinic sessions of OT on nhs at the moment. In the meantime the OT has said to adopt a low demand approach to help with the pda, focus on making them feel safe and try to reduce the overwhelm. I found this blog helpful, there are different topics covered https://www.amandadiekman.com/blog

I would recommend getting on a list for OT on nhs, if you aren’t already, or perhaps finding a good private OT who specializes in sensory stuff for children. Our dc had an acute burnout last year, and they haven’t emerged from it yet, dipping in and out. Still attending school but it’s tough, home life extremely hard. Not dressing, not eating meals, not leaving house apart from school. Lots of tv, some trampolining in the garden.

CAMHS might be worth a shot, they didn’t work directly with our child as too young (5), but we had some helpful sessions that basically got us up to speed on what might be going on, and gave us a space to process it all.

Our OT has said given the amount of adaptions we’ve made at home, school have to work harder to accommodate needs.

Our experience of this (in England) is that the focus will be on parent-led support predominantly, and lots of self-research (signposted to resources, links etc). From CAMHS (in the v early days) we got some one to one (online, parent led) for 6 weeks but that was mainly behaviour therapy. Once she'd had her GDA and had been formally referred, we were sent on a group OT workshop for parents (not children). When her anxiety became so bad she could no longer manage school (or leaving the house most days), we referred for more support but were turned down because she was awaiting neurodevelopmental assessment.

There are books that may help (Raising a Sensory Smart Child) and online resources. Coupled with parent-led anxiety management strategies and promotion of emotional literacy, this may find some success for a while.

But when she was so bad she could no longer tolerate clothes, we paid for a private specialist to come to our home and work with us and dd. It was clear no help was coming from NHS services by then. Appreciate this isn't an option for many.

The biggest factor is anxiety. That underpins everything. I'd also recommend completing a sensory profile, since anxiety and nervous system arousal go hand in hand.

Please also look at school and how that affects her behaviour. They are all different of course but very likely school is taking its toll on her.

Thanks so much everyone for these ideas.

She has done a bit of CBT adjacent work with the school psychologist which has been fine but the psychologist said that they had completed what they could at her age with the emotion regulation work. She said they would likely do more when she is older.

School are accommodating. We have major adjustments with timing and uniform. However some of the things on offer to her like a break room she doesn't use. I think it's because she is in quite a masked state at school (with the exception of the transition into school which can be violent) and doesn't want to be different.

CAMHS not involved because of her age and because it's considered a neurodevelopmental concern rather than a mental health one.

We do low demand parenting. I think we did this naturally in adapting to DD but I have since read about it further and have a better awareness of the cumulative nature of demands.

I will look at the book and blog recommendations!

If CAMHS have refused to provide support, complain. DD is not too young. Not at all. They shouldn’t have blanket policies of refusing to providing support to autistic DC just because they are autistic either.

It’s so frustrating how little help there seems to be available through nhs channels. And how it’s so different depending where you are.

The masking at school is really tricky, we see this too, although it seems to be cracking a bit. Increasingly not complying with tasks, more avoidant behaviour, a lot of repetitive play (I need to research monotropism). I’m curious to see what they try to implement, and if dc is prepared to engage. The need to be the same as everyone else like you said. I don’t know where we go from there, I’m not expecting it to help much.

like what you said, the degree of distress each day. They seem to be so worked up, on edge, upset so easily. It’s egg shells, there seem to be different issues each day, strategies need to be adapted every day because of the pda, it’s utterly exhausting. Pretty much nothing we suggest is accepted, the drive for autonomy is so strong, we get ‘no’ to everything.

has anyone looked into medication? I don’t think we can live like this for another 2 years approx until the next assessment, and however long it would take after that to begin the journey of meds. DC nearly 6, which seems so young to consider medicating, but they just seem to be suffering and the joy is being sucked out of life. I guess an expert would have some idea where to start.

Its helpful to read others experiences, I feel like I’m in a parallel universe to my friends and they children. No one can relate.

@christmasoverwhelm I know. So frustrating.

One simple thing they implemented in class which helped my DD through a tricky patch is that the teacher gave her a special book and said she can just get that out and draw or colour instead of complying with other classroom tasks whenever she wants. I think it just gave her a little boost of autonomy in the classroom that she had that option even if she doesn't use it much now. Probably better than the option she was given to go to another room which I think she felt more obviously marked her out as different. (Although pretty sure if I had made this suggestion she would have rejected it so the teacher must have pitched it really well and probably made her feel quite special. There is an important difference between her feeling special - which makes her feel safe- feeling like odd one out - which makes her feel vulnerable.)

I absolutely agree though the egg shells and constant needing to adapt strategies because nothing seems to work for more than a couple of tries is absolutely relentless and exhausting. And it's so hard for anyone to imagine if you haven't gone through it. You can't explain it to people. They don't believe it or think it's an exaggeration. Recently my mum came round to help and said "I know I can't actually help but I just feel that someone should be here to see it and witness so you don't feel like you're going mad".

I also really want to know about medication. Anything that could help DD access life could be worth a few downsides as the situation is so extreme. She can't focus on much learning or development when she can barely function. No professional has mentioned it so far but I am going to push for exploring the option.

@FloorWipesthanks for sharing, it’s so upsetting to see your child in this state, and the burden on the whole family is immense. It does help to hear other people’s experience. So relatable what you shared about your mum. Weirdly, although the masking happens a lot, the professionals we have seen have observed all of the behaviours. Thankfully.

The book idea is one to bear in mind, I agree that going to a different room is probably not something my dc would go for. They refuse to wear defenders or sunglasses, even though noise and light bother them.

I would urge you to look at Qigong massage for your child with autism by Louisa Silva. I have been doing this now for 10 and 1/2 months and my daughter's meltdowns have disappeared. She also has very few sensory issues in the sense We now go to restaurants and she sits by us and she doesn't create any fuss whatsoever. And also she has been potty trained within this period of time if or earlier. And I am a great believer of it and I encourage you to do it because it is free and you can do it in your own time being the parent of the child

Just coming back to this thread with an update on CAMHS. And to rant. This week we were categorically told that they will not work with children under 9. All support for children under 9 is essentially parent coaching and referrals to family services, CAPVA etc.

So apart from OT, it appears there is no therapeutic support or support of any kind, for children under 9 with mental health struggles or neurodivergent children who need help.

So neurodivergent children all over the country are stuck on this endless waiting list (36months) before even getting a diagnosis, with no access to any help.

So if they’re in an unsupportive school, and can’t afford private therapies… what actual help is there. A&e won’t even help as they can’t even prescribe melatonin never mind anything else.

@christmasoverwhelm you could look at requesting a referral out of area.

@christmasoverwhelm That is just ridiculous and so frustrating. And I feel like the benefits of "early intervention" are cited constantly, but there is none available. I'm really sorry.

@ChasingMoreSleepwhat type of referral do you mean?
I think the only route to a quicker diagnosis (another assessment) is through community paediatrics, and their threshold is very high. We are trying it. Or to pay for a private assessment.

I think once the diagnosis is clear and we know what is going on, we’re happy to pay for some form of therapy. I want to know what we’re dealing with first. I don’t know if it’s harder to get a clear picture when they’re so young, so much is shifting developmentally.

@FloorWipes exactly. The burden is really on school and parents.

@christmasoverwhelm I meant a referral for mental health support rather than a referral for an ASD &/or ADHD assessment.

You mention melatonin so you could also request a referral to a sleep clinic. Out of area if necessary.

OP is in Scotland, but if you are in England, you could also look at an EHCP. It wouldn’t be immediate, but an EHCP can include therapeutic support in excess of what is typically available on the NHS.