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Behaviour/development

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Autism

15 replies

Joseph1ne · 04/02/2021 19:38

Hello to anyone is reading this thread. I am wanting to see if there is any parents out there who can give me some advice or insight on autism and there journey with there child. My child is going through the process of being officially diagnosed with Autism and I have to be very honest here I feel quite alone and feel like I haven't had much support from anyone and it's mainly down to no one really understanding my situation. People think my child is just being naughty and that all his behaviour is for attention but I know that is not the case. It feels like a lot of what I'm saying to my child he doesn't understand.

This can be a bit of tmi here but I would really appreciate some advice. A main issue I'm having is poo smearing. I've been told it's a sensory thing and I have explained to my child that poo needs to go into the toilet not in the fingers and furniture or on the floor or the walls. I've spoken to professionals about it but the advice I've been given has not worked and I don't know what I'm doing wrong. It gets upsetting after a while of constantly cleaning poo of the floor and walls and constantly smelling poo everywhere and I know I'm going to sound dramatic but I have cried over it a couple times because I feel hopeless and feel like I just don't know how to support my son with this.

If anyone could give advice i would really appreciate it. Star

OP posts:
BackforGood · 04/02/2021 22:19

Firstly, smearing poo is not uncommon in children with autism, but is horrific when it is your child and not something you have come across before. You are not being dramatic. I think any of us would be reduced to tears. Especially when it isn't something anyone close to you is having to deal with it. Be kind to yourself. Flowers

You need to speak to other parents who understand you and what you are going through.

Try NAS - you do not need to have a final diagnosis

Contact - who are brilliant

Speak to your HV or Children's Centre and ask them to put you in touch with other parents who might have similar children

There are lots and lots of local organisations, that aren't National, so difficult to recommend on an (inter)national forum. But people like Kids run Groups in our local Children's Centres.

I don't know how old your child is ?
Are they pre-school ?
Or school age? as there are different people that can support at different ages.

On a practical note, there are things you can do like dress him in an 'all in one' vest which makes it difficult to get to his poo. Marks and Spencers sell them up to adult sizes now for example

Let us know how old he is and the advice can be more targeted.

Joseph1ne · 05/02/2021 05:48

Hello and thank you for responding to me. I really appreciate the advice so thank you very much. I'll be going to M&S to get those to try them out. My child is 4 and half and currently in pre school but at the moment due to COVID they are not attending.

OP posts:
Tryinghardorhardlytrying · 05/02/2021 13:00

Hi I'm a dad with autism and a kid being assessed for the same. There are two possible reasons IMHO.

For my ten pence worth, it sounds like your lad is "under-sensory". The smell and texture the real attraction here, your lad may be under-sensory and as such enjoy the touch sensation on his fingers and the strong smell. Under-sensory people tend to spend a lot of time engaging in the feel of stuff, and will be drawn to extreme sensations, such as strong flavours, smells, textures, etc. The fact it's poo is likely coz it's easily and readily available, and kids are resourceful at making their own fun. The smearing is the "cause and effect" element that fascinates autistic people, and the physical impact of seeing "what I made/did/created/caused" is a real buzz to the autistic mindset.

I'd suggest you do ya best to explain WHY the behaviour is unacceptable, as just "no" won't be sufficient. That's just how it works. An answer without explanation causes excess frustration and does more harm than good. Plus if you don't explain, he may think the act of having a poomitself is bad, which obviously you don't want to do. Find something he can smear as a substitute, and explain the differences. Use very clear, simple language and be persistent and consistent.

It is also possible he's "over-sensory", and can't stand the feeling of a dirty nappy and is trying to remove it. He then will try to remove the poo from his hands as quickly as possible. If he seems distressed while doing this, then this is likely the answer. If he seems to be enjoying himself, see my earlier answer. Does he fuss about other stuff on his hands/face, e.g. marmite, jam, mashed potatoes? If so, see answer 2, and if not, see answer 1.

Hope this helps, and if you have any more questions about autism in boys/men, I'm happy to help where I can Smile

BackforGood · 05/02/2021 15:15

This is my go to information for understanding some sensory behaviour. Full credit to Falkirk Council for both producing it and then making it readily available.

I agree with Trying that if you can find a substitution for him to get the sensory feedback from that might well help (something like children's slime / putty might work).
However, even if he isn't in Nursery currently, you should still be able to contact them their SENCo for further advice support in your area. If they don't know they should be asking their Area SENCo or Area Inclusion Officer for support.
Same with HV, as he is pre-school. Phone them up nd say you need help.

Joseph1ne · 05/02/2021 17:52

Thank you for your advice and for your insight on this your reply has been very informative and I really appreciate that because every professional I’ve spoken too has just said it’s just because he has autism but never actually explained to me what poo would be like to my son and I appreciate you telling me that because I feel like I understand it a bit more.

I think I should explain how the smearing of poo began which was when my son was introduced to going to pre school. I know it was a big change in his routine so I notified the teachers that it would take him a few days maybe longer to get used to the routine and I tried my best to ease him into his new routine. I was told by his teacher on his first week that he was struggling and that other children where unsure about him because of him getting upset about them getting into his personal space and him getting upset with loud noises. My son is in the process of getting a classroom assistant and in the meantime is only aloud to attend school for 45 minutes while other children are there for the full day. I did inform the school what was going on at home with the pooing and they where somewhat understanding.

I have explained to my son that he needs to use tissue when he needs to touch his poo not his hands because it is germy. Looking at it now I do feel like I haven’t explained it enough to him. I feel like it can be hard to explain to my son about this because it seems like he doesn’t understand what I am saying. I have been using visual cards at home and have a visual sign beside the toilet giving a step to step of visuals on what he needs to do when he needs the toilet.
I am being consistent but would like to go about it with the right information because I feel like what I’m doing is not working and that’s why I made this thread to see what else I can do to best support my son. It has been going on for months now and it just really upsets me and I know it sounds selfish because it is not about me but I do feel very alone with this. And I do appreciate you both replying to me as the information you both have given me has been helpful.

OP posts:
Tryinghardorhardlytrying · 05/02/2021 19:16

It is isolating feeling like you're facing an extremely unusual or challenging set of circumstances. Most parents will give you advice based on their own "normal" kid, but that's like getting advice on driving a manual car from people who only ever had automatics, in that the broad strokes are the same but the devil is in the details. You'll have frustrations you can't explain and when you try, people will think they understand but won't. You'll get frustrated with your boy and then feel guilty coz it's not his fault. You'll be a get he doesn't understand, and then angry with yourself that you aren't explaining properly. You'll give every inch of yourself trying to do the right thing, n then feel guilty every time you snatch a few minutes for yasself. You'll constantly be thinking you're doing it wrong and spend more time second guessing yourself than actually making a firm decision. You'll blame yourself for every decision you made about choice of partner, pregnancy, delivery, right up until now, and be constantly worried about screwing him up further and no matter how many people tell you there's nothing you could have done to prevent how he is, you'll never believe that.

But you aren't alone.

Parents of autistic kids all feel like that, and the ones who go on about autism being a superpower care full of shit. It's a hard life and it's hard to watch. But only by accepting what I've said will you ever be able to move forward. You'll have moments of joy and every success and failure is a learning curve. Don't be afraid to ask for help, but don't be afraid equally to make your own decision at the end of the day. If you're going through hell, keep going. The only failure is giving up.

As for your situation, I imagine he found the preschool overwhelming and found sensory tasks comforting. You can shut out the world with that kind of thing, be it Lego, a guitar, a fidget spinner or an Xbox. Mine was making stuff out if other stuff, and still is. Only difference is I now use bigger tools! He's found something calming that is transfixing and mesmerizing, and he's focussing on it. Take this and run with it. Is he verbal? If so engage with him over it. Everything he does is a form of communication even if it doesn't use words. If non verbal, demonstrate. Don't use informal expressions, use "bad" instead of "not good", "yukky" instead of "not pleasant", etc and keep going with it. Maybe you and him could make a poster to remind him? The more engaging a lesson, the better it is learned.

Most important thing? Don't be afraid of your own feelings. Is it selfish? Maybe it is, but if we don't address our own emotional needs, how are we meant to be mentally fit enough to support someone else? Talk to those who will tell it like it is, not who tell you what you want to hear. But if you feel weak, take time for yourself when and where you can. If it's not too personal, are you in a relationship, either with dad or someone else? Is dad around? All of these things can make the situation both easier and harder for different reasons. I've seen it all and done it all, both with my own marriage and watching my parents'. If you ever need any advice please feel free to ask or DM or whatever, I feel I owe it to others to share what I've learned 🙂

Joseph1ne · 06/02/2021 08:28

You are exactly spot on, people I know who have given advice it’s all based on there opinion of a child being naughty which is obviously not the case so I haven’t bothered talking to them about it because they cannot understand what I am talking about. When I spoke to family about the pooing they where shocked and they looked disgusted and said can you not just tell him to stop and not do that. I’ve had arguments with them over this and honestly I haven’t spoken to them in a while because I’m sick of hearing, “it is just a phase”, “he doesn’t look autistic” and “he’ll grow out of it”. I’ve tried making them understand with information and letters based on multiple professionals opinion on my son. I am not with my sons dad but we do communicate when it is about our son but do not confide in each other about this.

Everything you have said is so on point with everything and I appreciate it because I have felt so alone and it’s nice to speak to a fellow parent who just gets it, I don’t have to go into full detail you just know how it is. He is verbal but cannot have a conversation with you, everything is straight to the point and he does speak some jargon. Thank you for the advice and being understanding. Star

OP posts:
Tryinghardorhardlytrying · 06/02/2021 11:49

I'm gonna give you an analogy.

Conversations are like meals. Speech is like a kitchen, cooking skills are like communication skills and words are like ingredients. Autistic people often know the meal they want, know how the kitchen equipment itself works, and understand the ingredients, but lack the cooking skills.

Most normal people have a basic pan and a basic hob, and some dried Tesco value pasta and a jar of sauce. Autistic people have a fully equipped kitchen and Waitrose meat and posh ingredients. Unfortunately, the non-autistic person will often create the better meal because they have more cooking skills and can get the most out of their kitchen, while the autistic person will spend ages getting the oven at the right temperature, not realising they've let the stuff on the hob burn.

This is the frustration many of us face. Trial and error will get us to that Michelin star, but it'll be a long slog, and mastering pasta in one particular kitchen doesn't automatically mean they could master curry in another without having to repeat the same learning process.

The reason I've given a seemingly long-winded analogy is because it allows me to take difficult-to-understand concepts and our them in terms "normal" people will easily understand. As a parent of an autistic kid, you should try this as it will help you explain your boy to others. It's not your fault other people lack the patience, ability or experience to understand autism, but unfortunately you'll have to do the work for them. Such is life. You may so find explaining the poo situation to your son by using a SIMPLE, BASIC analogy based on his interests, may be the best way if getting through to him.

I ask about dad because parents on different pages are a common factor and this makes things harder. If both understand, they will support eachother. If one does and one doesn't, the marriage will be strained. It happened to my parents. If there is another bloke on the scene, make sure he is up to the challenge. If he isn't, then this can lead to disaster. If he is, then this can often be the best situation because while he will have understanding and tolerance, he will also have objectivity and a certain amount of detachment, allowing him to be the "bad cop" when necessary. As a biological parent, it's not always easy to take sentimentality and emotion out of difficult decisions and actions, even when the decisions are in the kid's best interests. (I have a step-son with his own challenges as well as my own son and know all about this!)

I tend to say that "Autistic people don't look autistic in a photo, but will look autistic on video". That's because there's no physical autistic trait in terms of a third eye or a tail or whatever, but if you know what your looking for, seeing behaviour and interaction as a complete package will possibly give it away. Even then, it's not a given and it's always harder to detect in women.

As for growing out of stuff, you learn ways of making things work and of coping, but it's not something you grow out of. In fact, the older you get and the more crap life throws at you, the more pronounced the differences between you and "normal" people the same age will seem. Don't listen to the armchair experts, and even some professionals who work with autism are dodgey in terms of their actual ability to understand. To use another analogy: my wife's prenatal consultant was extremely qualified, but he still won't ever knowwgat it's like to be pregnant...

Joseph1ne · 06/02/2021 16:15

I really do appreciate the analogy and it is a good way to explain about a child with autism. I will use this to explain to others about my son.

Im all about routine and his father isn’t which is difficult because there is no consistency and it is unfortunate but when I voice this he just thinks I’m being bossy and doesn’t like me telling him about what routine I have at home that he could do at his so we both are giving our son a routine in both homes. It is just me and that’s why I am looking for other parents like yourself to talk to about this because it’s easier to speak to someone who understands.

Thank you for all the insight it has been helpful for me.

OP posts:
Tryinghardorhardlytrying · 06/02/2021 17:11

No probs, feel free to ask for advice in the future 🙂

BackforGood · 06/02/2021 18:51

Two really, really excellent posts by Tryinghardorhardlytrying

Really helpful.

Tryinghardorhardlytrying · 06/02/2021 22:22

Thanks, glad to help 😁

AmaryllisNightAndDay · 07/02/2021 11:42

Just to say - MumsNet has really good Special Needs threads, if you post over there as well there you'll find other mums whose children have autism, at various stages of diagnosis and getting help.

I didn't have smearing issues but one thing I was advised was to give safer subsititutes for unwanted behaviour. Like stretchy toys to hold, or a piece of blutak or plasticene to squeeze and smoosh. No guarantees at all but sometimes that can cut down the other behaviours a bit! Apologies if you've already tried and it hasn't helped. Parenting a child with an ASC can be a lot of trial and error. Flowers

Tryinghardorhardlytrying · 07/02/2021 14:07

@AmaryllisNightAndDay

Just to say - MumsNet has really good Special Needs threads, if you post over there as well there you'll find other mums whose children have autism, at various stages of diagnosis and getting help.

I didn't have smearing issues but one thing I was advised was to give safer subsititutes for unwanted behaviour. Like stretchy toys to hold, or a piece of blutak or plasticene to squeeze and smoosh. No guarantees at all but sometimes that can cut down the other behaviours a bit! Apologies if you've already tried and it hasn't helped. Parenting a child with an ASC can be a lot of trial and error. Flowers

Ok so I've "reported" this thread coz the admins can then move it to the "special needs" section as you suggested. It works, coz I had the same happen to me when I accidentally stuck a question about dummies in the "feminism" section 🤣 hopefully you'll get more insight? 👌🏻
Mrsjonesyy · 11/09/2021 22:16

Hey ladies, thought I'd write a message, both of my children have autism so I decided I would do a YouTube channel to speak and bring awareness, if you guys need support or just want to listen to my channel then please feel free, always here to answer any question or to even listen to all of you guys, this is the link youtube.com/channel/UCYfx9GbS9kfBA0ClXm17xMg lots of love guys 🥰

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