ASD and issues with personal hygiene

[Thisismynewname123]

My dd is 12. She has always had huge sensory difficulties which, among other things, have makes it extremely challenging to brush her hair, brush her teeth, wash her hair, toileting. I'm at a loss and I can't manage her anymore. She is extremely demand avoidant. She has never had any real support from OT. She has an EHCP but it just focuses on difficulties at school. The OT called me today to say that she is being discharged from their service because school is putting in place the things that they have recommended, so from an EHCP PoV, there is nothing else they can do. I told them that I really need OT support with the personal hygiene issues outside of school. She said there are 2 referrals she can make. One is for targeted support, but she will be rejected because they've told me everything already. The other referral is to the autism behavioural team, but they'll reject her because we don't have any major behavioural problems (ie, she's not violent). She said what we really need is CBT, but they don't have any clinical psychologists who can offer CBT, so we won't get that. We need to change her motivational behaviour, to make her understand and want to have better hygiene. But they have no support for this. They then went on to tell me that it needs to be tackled when I child is very young, before it becomes so ingrained, which is when I started crying, as I have been begging them for some help since she was first referred to OT when she was 5, but I have never had any. I desperately need to hear from anyone whose child has successfully started brushing their teeth, etc, at or after this kind of age, and if so, how you managed to get them to do it. Did it require therapy (I'm not against doing this privately, but it's expensive and we can't afford it without knowing that it's a relatively short term solution that will actually work). This with a child who is cognitively aware enough to have to want to do it herself. She is too old for me to do it for her, other than reminding her/handing her the prepared toothbrush, etc. I'm at my wits end, worrying about her teeth falling out, but I don't know what to do.

Would she accept you doing it for her? Honestly, if she will, then clean them for her.

@PickAChew Not a chance! I wish she would let me do it for her. I ask her all the time, but it's an absolute no

...her hair, yes, because she can't brush it and tie it back (it's a big screaming fight each time, but at least I can do it). Her teeth, no chance, never, absolute 100% no way!.

That's a shame.

It is a hill worth dying on, obviously. Silicone toothbrushes are supposed to be more gentle, so that's worth a try. You can get flavourless toothpaste, if that is part of the issue.

And, tbh, when Ds1 (now 15) was losing his pre-molars and refused to have his teeth cleaned, dh held his arms and I cleaned! He is very autistic, presenting with severe learning difficulty, though, so reasoning ain't happening.

We have a similar problem, I started a thread a few weeks ago about how to get DS1 to do things himself. DS1 (11) is resistant to any independence - we still dress & wash him, brush his teeth and hair etc. Like PickAChew, we hold DS1 to brush his teeth. For DD would disclosing tablets help show her why she needs to brush?

If DD needs OT it should be in her EHCP. Anything that 'educates or trains' belongs in section F and therefore must be provided. If the NHS can't or won't the LA must commission independent providers. The same goes for CBT, it can be included in section F.

What are the actual issues with each of the personal care tasks you mention? Can she articulate what she doesn't like or finds difficult?

Some people say chewable toothbrushes work for their children with sensory issues. My son tolerates Curaprox toothbrushes which are very soft. Also he is better with non mint toothpaste. He can only tolerate having his hair cut at home and he hates it every time.

We used a face visor and a cup to wash DD1's hair for years as she couldn't tolerate a shower at all. She only just tolerates it now at 11 and prefers a bath or not to wash at all (which is not an option).

DS needed set toilet routines. Continence teams can help with this if you are struggling.

What kind of hair does she have and what are the issues with brushing/washing? I use a water spray bottle and detangling cream on my daughter's hair along with a denman brush to do her hair very gently in sections whilst she watches TV or plays a game on a device. We only wash with shampoo about once a month, just rinse through with conditioner weekly which makes it less tangly. We also style it in a way that it only needs doing once a week.

I’ve worked with children with similar issues around teeth brushing. If she’s willing ask the dentist to use a fluoride coating on her teeth which will go a long to protecting them. They can usually do this quite regularly

@PickAChew We've tried all the toothbrushes, and all the toothpastes including those that are not minty, don't froth, aimed at ASD, etc. She tolerates only a fruity flavour, but she sucks at the toothbrush for a minute or two to suck it off, then that's it.

@10brokengreenbottles DD is similar. I have to dress her, wash her, brush her hair, etc. It is all challenging, but we get through all of that (with lots of screaming, running out of the room, etc). For today, I'm focusing on the challenge of teeth, because it's something i can't do for her, and I was really depressed after the call I had with the OT today where they basically told me that there is no help until she's motivated to do something about it herself. Yes, we have tried disclosing tablets.

The EHCP is a separate issue. I'm not really sure how I can get this written into her EHCP, when it is something that we have raised all along but as it's not in the NHS reports, they won't include it. She's only had her EHCP for a year, and at the time I gave up on the fight because I was worn out from the process. It is something I need to pick up again now that it's annual review time (hence conversations with the OT) but I don't know how to get it in there without paying for (yet another) private OT report. We have had several over the years.

@Choconuttolata no she can't verbalise what the issue is. She is having SALT as well to help her verbalise. Her speech is fine. Expressing herself is a challenge. She will not discuss anything. It becomes a taboo word. There are words relating to these issues, and as soon as the word is says - in any context, not necessarily to do with her - and she will scream, cover her ears, and run out the room saying that we're not allowed to say that horrible word. So things like "hair", "tangles", "hairbrush", "toothbrush", etc, we're not allowed to say these words in front of her if we want peace to continue. Regarding haircuts, we have luckily found a hairdresser who comes to the house, she has an autistic son of her own so she is very understanding. It's still extremely traumatic, but we get through it a couple of times a year.

Hair washing - she hates water on her face. She will very rarely shower, so I have to wash it in the bath. Her hair is down to her bottom and very thick, but we can't cut it short as it's a comfort for her. Her stim is to stroke her hair under her nose, so she only allows a very minimal amount cut off. After washing, I use serum, leave in conditioner and anti tangle spray, and a wet brush. It gets a minimal brushing, but enough to allow me to tie it back and control the deep matting that we occasionally get.

@SnarkyBag unsurprisingly, she doesn't allow the dentist to do anything except look. However, the fluoride coating sounds interesting so I will ask about that.

We really need to tackle the behaviour around it, rather than physically forcing. She is the same size as me, so much too big for me physically force it.

My son was like this until around 10. Its still a flash point. So the sensory issues were a problem and for us the non foaming non flavoured toothpaste with a soft 3 sided brush did help - but the demand was still a problem.
One thing i did was decide to give it a break and we got chewing gum to chew after each meal and some sweets! That had something in them that helps. Then we did some social stories about why teeth are cleaned.
Then started leaving toothbrushes out all over the place with toothpaste on.
Then started non verbal promlts of just passing one across.
We can now suggest that it might be time to brush teeth.

Xylitol sweets

I'm just wondering if there is a way play therapy would help. She could practice doing hair on a hair doll's head, or grooming a pet, or do your hair to help her to see it in a different way.

Could you work towards compromising with her that most of her hair gets put back in a plait with some left out at the front to comfort herself with (she could put the end of the plait under her nose too). This would reduce tangles, matting and reduce amount of time and frequency of brushing.

Social stories are also a really good way of talking about the need for personal care, we used them for encouraging toileting.

Would she try a mild tasting mouthwash to help reduce bacterial levels maybe?

Ask for a reassessment of needs, specifically request assessments from an OT and a psychiatrist &/or Clinical Psychologist. If the LA won't include OT and CBT after your AR, or reassessment if you request one, you will need to appeal and get your own assessments.

Play therapy is a good idea and can also be included in EHCPs, as can equine therapy which may also help if DD helps groom/feed a horse she could work through some of her difficulties at the same time - or more general animal therapy. School don't have a therapy dog by any chance?

If DD under the specialist community dentist?

@Thisismynewname123

Quite frankly that OT sounds useless. It sounds like your daughter's sensory needs have never been properly addressed.

She needs a thorough sensory assessment carried out so all her needs are identified and provision put into Section F to meet those needs. (As 10brokengreenbottles said, anything that educates or trains a child is educational provision - these are personal independent skills, which she needs to learn.)

And if CBT is required, to get her into the mindset to carry out personal skills, then that needs to be put into her EHCP too.

As it is coming up to the AR, I agree you should ask for a reassessment of needs, stressing the urgency around acquiring personal skills, and asking for detailed and specific advice from all those 10brokengreenbottles suggested.

Incidentally, our son used to have problems with certain fairly commonplace words.He would shout loudly, "Don't say X! Don't say X!" He even shouted at the television if he heard the words on there.

This had been going on for years and then, because he developed anxiety, he was referred to a psychiatrist who recommended CBT.

We had to wait 8 months for a therapist who had experience of working with people with autism, but it was so worth it, as she was fabulous. As well as getting rid of all the other hang ups he had, she also managed to make the aversion to these words stop. It was truly amazing.

@MildredPuppy I'll look into the Xylitol sweets. That's not something I've heard about before.
@Choconuttolata she will use a mild flavoured children's mouthwash. We do use this as often as I remember.
She does sometimes get interested in her hair (I have an older NT dd as well, who likes to practice braiding, but very rarely will DD allow). Every now and then she asks me to straighten it, which, although she says no brushing with the straightening, I have to brush it a minimal amount for the straightener to go through it. Once we do that it will keep it tangle free for a week and it's such a relief during that time!

Do you think social stories work at this age, for a child who is not cognitively significantly delayed? Do you have any you could link to?

@10brokengreenbottles and @Ellie56 the problem is that there is no real OT support where we live. There is nothing at all for sensory issues, beyond offering a sensory workshop which I have already done. They refused to assess her as part of the initial EHCP assessment because she had previously been discharged from their service because her motor skills are not delayed enough to warrant it. (The NHS OTs have never assessed her sensory needs). At the time, I paid for a private assessment. The NHS OT then wrote a report on the basis of the private assessment report without seeing her. They incorporated some of the basic recommendations (nothing that costs anything. It was mainly around the school implementing a sensory diet). I don't think the assessment focused enough on the self care, because it's not something that they can assess beyond what I was telling them. So although there are 3 pages of the report talking about her sensory issues, the only specific recommendation around self care says: "xx will benefit from targeted work to try to reduce her tactile sensitivity as this significantly impacts her self-care". That assessment was done less than 2 years ago.

Play therapy and equine therapy are both good suggestions as she has never had either before. Who do I ask for the reassessment of needs? The AR will only be with the SENCO and the LSA who spends most time with her at school. Do I need to request that in advance? Through the SEN officer or through school? I really think it's the CBT / a psychiatrist that we need, but our (notoriously bad) LA will need to be taken to tribunal before I get anything like that in the EHCP.

You ask the LA for re-assessment of needs. Use the model letter here:

www.ipsea.org.uk/asking-for-a-re-assessment-of-a-child-or-young-persons-needs

Just because there is "no real OT support" where you live is not a reason to refuse to assess. The LA must secure assessment and provision from elsewhere.

Will they include self care in the EHCP if it's not something that I expect to be managed through school? The AR is with the SENCO and LSA only, so I don't know if there is much they could say about self care as they're not really aware of these issues beyond the most basic information that I've given them.

Do you think it would help at all if I could convince the OT that I spoke to yesterday to send me an email saying that she thinks she needs CBT (although I doubt she'll put it in writing, but I could ask).

Can you go through the GP to get access to clinical psychology for CBT or play therapy via paediatrics?

I am also wondering whether having another sensory stimulus whilst having her hair or teeth done might help, like a weighted lap pad or toy to stroke or a squeeze ball to squeeze or a vibrating device to hold. We use a buzzy vibrating device whilst taking bloods from children to help manage pain stimuli from the needle, maybe a distraction stimuli would help.

We make our own social stories with photos and simple sentences, but maybe watching a TV program with hairdressers might be an alternative if she is more able to understand or YouTube videos about haircare.

Yes, self care can be included in EHCPs. OTs can assess self care beyond what they have already done for DD. Anything in writing will help, even if it is your summary of the conversation without their reply. However, it is unlikely to be enough given the sentence you quoted in your pp is so woolly. There is nothing detailed, specific and quantified about it! "Would benefit from". What is the targeted support? When? How often? Who by?

You don't need to go through your GP for CBT or play therapy. Having it in the EHCP is more likely to guarantee you the support on a more frequent basis and for longer.

I have daily battles over this. She is happy now with the Lemon toothpaste and fruit mouthwash. Also her three sided toothbrush is better.

My next challenge is with periods. She will start them in the next year and I'm wondering whether the period pants will be better. It's another minefield.

Will they include self care in the EHCP if it's not something that I expect to be managed through school?

Yes. Remember it is an Education, Health and Care Plan, so care needs should be included, and if she needs training to carry out self care, that provision should be in section F.

Self care comes under life skills in a specialist curriculum. Ds2 won't let anyone cut his hair so gets it cut at school as part of the life skills curriculum. Hopefully, post covid, that can move on to visiting a salon or barber so we can take over in the future.

Hi I am really feeling for you my daughter is now 14 .and has autism and sensory issues I have rhe same problem and now puberty has it .it is even harder

Hi .this caukd be my life .My daughter is now 14 and I ams still having these issues .and now puberty has hit it is even harder.

Hi this cauld be my life .My daughter is now 14 has autism. and sensory issues .I am still going through this.and now puberty has it .hygiene issues are even harder

Defently period pants they are a godsend for autistic girls .my daughter caukd not tolerate pads .and it was a battle. Paid iut for period pants and they are brilliant