Please help 😫 step-Mum to autistic child since 2yrs old, struggling...

[Sw8step]

Apologies in advance as I think this will be a long post...

I have been step mum to my partner’s son since he was 2 years old, nearly six years now as he turns 8 next month. Our relationship is generally excellent, he sees me more as a second Mum as he’s known me pretty much his whole life. His real mum has a partner and toddler with him, and they live with my stepson’s grandmother too. My partner and I live 5 minutes’ walk away and his son stays with us 3 nights of the week. In this respect things are pretty good given that everyone communicates with each other and my stepson is growing up with 5 adults raising him and providing him with love and care.

My stepson has a form of autism called PDA (pathological demand avoidance) and also mild ADHD. He has started a new specialist school this year which has been so good for him.

My problem is that, at his mum’s house, he is completely fawned over and mollycoddled (in my opinion); his mum and grandma will literally give him whatever he wants, whenever he wants, which he has even used against my partner and I when he doesn’t get his own way when he stays with us: “Mum and grandma let me do what I want when I want to and do everything for me!” he will shout at us. He is 8 years old next month yet still expects to be literally spoon fed his breakfast every morning even though he is perfectly capable of feeding himself. He also has an unhealthy addiction to screens, and his mum has given him his own laptop, iPad, tv, and mobile phone. When they break, she gives him hers to use until buying a new one. He spends hours on them from the moment he wakes up to the moment he goes to bed. He watches horrific videos that involve blood and guns and killing, and has learnt all sorts of horrific words from them. We have had massive issues with his use of swearing when he has an anxiety attack, and somehow have managed to get it so that he never ever swears when he stays with my partner and I, even during an anxiety attack, yet swears all the time when staying with his mum, even when not feeling angry or upset. It’s very clear that our households have different rules and opinions, and that my stepson reacts differently depending on who he is with. There have been times where when angry, my stepson has gone around screaming “I am going to fucking rape you!” Or calls his teacher a “motherfucker”. (Apologies for the language.)

When voicing my concerns to a therapist about the videos that his mum lets him watch, she mentioned that this seemed serious enough to report to social services. His mum always uses his “condition” as an excuse, saying he is not neurotypical and it’s easier to let him feel calm and avoid anxiety attacks by letting him have his devices and watching what he wants. His teacher at school once called her to ask why he had been watching these videos and she explained it was because of his “condition”.

He has his own YouTube channel and on his phone downloads games where the aim is to decapitate animals etc. I recently looked at his search history and found that he had written “kill a baby”. On the other hand he has really lovely hobbies and is obsessed with flags and languages and trains. He can be extremely loving and caring too.

I should say that his mum is extremely loving and provides him with more clothes and toys than you could imagine, but to the point where I feel it is irresponsible to be letting a vulnerable child have so many devices and accessibility to online dangers.

I realise I am not the real mother, though we have all accepted I have quite a prominent parental role having been in the picture since my stepson was a toddler; we have taken him on holidays, I look after him without my partner and really play a massive part in his life, dare I say am nearly just as much a mother figure without the biological links, because of how he spends half of his life with us.

My partner is himself on the spectrum and finds confrontation difficult, so when faced with it from his ex or his son, usually goes along with whatever keeps everyone happy.

I’ve been told that I am trying too much to be his real mother, but I’m finding it difficult to watch a child who is so bright and intelligent and loving, be, in my opinion, let down, and to not say something, though when I do it is met with resentment from most parties, even though it would appear that all of my concerns are actually valid when speaking to other parents.

What do I do?

[MycatsaPirate]

Sounds like everyone in this child's life needs to go on a specialist parenting course to learn how to deal with him when he makes demands. PDA is hard to deal with (I have a child on the spectrum and dealing with her as I used to deal with her sister is completely different and I have had to learn lots of different techniques to cope which don't result in a melt down).

I would also ask to speak to the SENCO at his school and ask for an all parents meeting (so all five of you heavily involved in his life) to deal with all the issues you have raised but ask the SENCO to raise them for you.

If that doesn't stop the conflict between the two homes in attitudes to his viewing habits and screen time plus the babying him then yes, social services may be the way to go.

It's disturbing to hear what he is viewing and searching for online. Very disturbing.

[Stepneskpo]

Thank you for your message @MycatsaPirate. Because my partner and his ex are the main contacts at school etc, anything related to my stepson of course goes through them. They are the ones that have been to all of the SENCO meetings at his old school and fought to get him into the school he is now. I didn’t really have much involvement in that, not out of choice.

I worry that by me approaching any member of staff at my stepson’s new school, I’ll be further accused of “trying to be his mum” and it will cause a lot of conflict between the two households.

Whenever I have spoken up it has ended in conflict which results in my partner receiving the bulk of the backlash, or him having to listen to the other household lay into him and I. I feel like approaching anyone at his school would just make things explode, similarly approaching social services...

[BondMomBond]

PDA isn't a diagnosis on its own, it's not recognised as a sole condition and dx of asd.

[Ganache]

Hi. I really wish I had something I could say that would help. You are not alone. I too am the stepmom to an autistic son. Our stories are very similar. His dad is on the spectrum as well and avoids conflict at all costs. His real mom is very bossy and both parents are in denial a large amount of the time. My stepson is getting worse and worse as he gets older. He is now 12, and big. Im a little scared of him at times to tell you the truth. His parents let him stay on screens All day long. I have tried to take baby steps on dealing with screen time as well as colossal giant size steps. Nothing will ever work if you can’t get your partner on your side. I have given up some and started working more hours . I recently got my partner to sign up for newsletters from an ADHD website on line. (The boy has autism and ADHD.)That took about a year. :-( He doesn’t do anything for himself. His parents do it all. When I ask him to throw away his trash or put dishes in the sink he says no or complains. Recently he complained because he didn’t want what my partner made for dinner. It was a dish he usually loves, but wasn’t in the mood for it. I said fine you can make yourself a sandwich. “That’s bullshit, I shouldn’t have to make my own food!” Dad starts getting up. No! I say. Your dad is not going to let his dinner get cold and make you something else when he already spent 1 hour making this. It’s 4 ingredients you can handle it! Freaking out continues. I say fine I will get all the ingredients out for you like I do for the 3 year old I baby sit for and then you can make it. Well, that doesn’t make me feel good, he says. Well it’s the truth, I say. In the end dad gets up makes his freaking sandwich. Ps he is high functioning autistic and has made sandwiches in the past. He is totally capable. But, with parents like that why bother. Sigh. Love my fiancé so much but he is so clueless on what he is doing to his boy. We communicate really well but just can’t get on the same page. His sons outbursts and rudeness is highly affecting everyone including our two other kids. If you ever find a miracle cure please let me know.-Sharon

[soapboxqueen]

I don't think going to the school to discuss anything would be a good idea. Firstly, they shouldn't discuss anything with you unless you have pr or your dh is with you. Secondly I think, as you say, it could cause a rift.

Pda is very difficult to deal with and there is very little support as very few people even know about it. The one event I attended about it focused very much on 'yes it is a real thing' rather than coping techniques. I've lost track of the people who have told me how my ds is capable of X or y and is only being difficult. When in fact today is different because of other factors so no he can't cope today. It isn't about a choice he is making.

The inappropriate content is a worry. I suspect his mum doesn't know how to remove it now that he wants to see it without a massive problem. Anxiety and control are key elements of Pda so she may not know how to proceed and finds the only solution is to keep things as they are. No, taking a firm line and being consistent is not the answer either. I wouldn't be to concerned with the amount of screen time as long as there are other activities you can organise that he enjoys. Plenty of asd children rely on iPads or similar to help them regulate their emotions.

The swearing with his mum and not with you could be more down to having to put a face on with you but being more relaxed at home rather than expectations. Many children reserve their most extreme behaviours for when they are at home and safe.

It might be worth while seeing if there are any courses you could go on as a couple of even as a group to help support each other. Unlikely they'll be Pda related but it might give you space to talk.

[Bananasinpyjamas11]

You may not be his real mum but there is a serious issue here. Only you seem to be raising it.

There are ways to restrict iPads and phones, he’s only 8. If they don’t do it now there will be real trouble ahead for this boy. I’m not sure you can be cross with him when he’s highly anxious, it won’t help. The phrases he uses have a direct source and that needs to be tackled. He should still be on kidsyoutube only and not be able to search if he is looking up awful things.

You can have direct control in your home of his devices. Put restrictions on his iPad. He will kick off. But some things cannot be allowed. Allow him control over everything else, let him come up with the apps he wants, the websites, he can choose say 30 but he cannot search.

Allow him a fairly long amount of time on the devices, but introduce activities that he does say after school or whenever so that he has a healthier balance. It might be extremely difficult for the boy to regulate his emotions, so having stuff like swimming or sports will replace some screen time.

Tell the mother that you’ve restricted his iPad (do not tell her the code).

She may fight to get restrictions off but let her. What’s the worst that can happen? They both just get angry. Get your DP to be steady.

If it is PDA then the key is to reduce the demands as much as possible. Have your ‘absolutely not’ list, e.g. violence, watching violent videos, and absolutely must list - brush teeth, go to school, go to bed. These must be the core, and do not worry too much about the rest until these core ones are solid.

If he going to school and brushing his teeth etc those things are great. Nurture the good stuff. Ask him to help you out, give him autonomy, build his confidence not through praise but by getting him to feel that he has choices and valid skills.

Read the pda society’s information it’s quite useful. www.pdasociety.org.uk/

[swingofthings]

Great advice from banana.

[soapboxqueen]

I'm sorry but simply putting restrictions on an iPad and holding fast may not be that successful depending on how severe his pda is. A meltdown is not just getting angry. That could have serious consequences for the mum when he's goes back home and she's stuck because she isn't given the lattitude to deal with the situation. More likely is that the mum will just go and get him a new device.

Far more sensible to create a united front, discuss as a group the issues with what he has been watching. Discuss the concerns some professionals have expressed to emphasise the severity of it. Any plan will fail if it is only enacted 50% of the time.

When you do decide to move forward with a plan, It might be worth concocting a 3rd player (the broadband company for example) who has changed the rules and you have no choice but to have the restrictions. Some children with pda find it easier to cope when it isn't the person in front of them making the demands.

[Stepneskpo]

Thank you all so much for your replies.

My stepson’s PDA is questionable: his mum is convinced that he has it because he seems to fit a lot of the criteria and is also not “typically” autistic: he can be very sociable, very loving and caring and generally is nearly like a “neurotypical” child. When taking him for a formal PDA assessment at a specialist clinic up north, they seemed to be rather confused because whilst my stepson displays some characteristics of PDA, they really are extremely mild and the clinic said that he really isn’t a typical PDA sufferer in that he most of the time actually responds well to being asked to do something. He rarely has these meltdowns at all in fact. We have read so much online material and books and I personally question whether it is PDA because most days are generally easy in comparison to what it seems people with PDA go through.

I have spoken to the mother several times about having united rules across both households but she says that he is old enough to make his own choices at both households and if that involves being on screens all day, that’s what she will allow.

Our household isn’t as affluent and can’t afford the amount of toys and screens that he has at his mum’s place (one thing he always uses against us when saying he wants to go back to his mum’s house), but we have so many other colouring books and paints and toys that he does enjoy playing with and at the moment is really enjoying nurturing his own garden of plants outside our door.

He is such a loving and caring boy and it’s so upsetting to see him looking at these videos or playing with his toys and laughing as he pretends to chop their heads off. Even more so when he turns around and says “my mum and grandma let me do whatever I want and when I ask them something they do it for me, take me back there.”

[soapboxqueen]

It is actually very difficult to get a diagnosis of pda as it isn't in the diagnostic manual yet. Which means that the specialist centres only see the most extreme cases and it is still up for debate whether it is a stand alone condition or just another aspect of asc. So I wouldn't put much stock in being unable to get a clear diagnosis. My ds hasn't either, and has milder symptoms but they definitely are there.

I honestly think you in a very difficult situation if the mum isn't on board. I think your best bet is distraction while he is at yours or maybe your Internet being broken is another option (which you are working very hard to fix obviously 😉). I don't think the amount of screen time is the problem really. It is what he is watching that is the concern. Don't conflate the two or you'll give yourself too much to tackle.

Just a thought, when he complains and wants to go back home, is there are possibility you could just take him? Maybe when his mum has something planned? Will that spur her on to organise something together?

[Bananasinpyjamas11]

It doesn’t sound like PDA at all then! There is a mother problem there. Autistic kids can be very suggestible and sensitive to their environment, so this searching for ‘how to kill’ etc is very serious and damaging for the young boy. He is still just 8 years old and is exposing himself to serious violence online.

I'm sorry but simply putting restrictions on an iPad and holding fast may not be that successful depending on how severe his pda is. I totally disagree with this. You absolutely have to set restrictions on his devices. It is better to do this with as much ‘buy in’ from him as possible, with or without PDA, but the overwhelming need here for this boy is to take away this very damaging and long term problem of watching nasty videos.

You cannot totally avoid meltdowns, and if there is a safety issue (which this is) then even if you set it up as well as possible, then you might all have to ride out any anger/anxiety. You do that by setting it up well, by ensuring everything else is calm and nice, and by sticking to it. You wouldn’t allow him to run into the road, to hit others or to not go to school. You can and should put up boundaries it’s just having much more thought into how you do this. Using humour and making him feel that it is his decision as much as possible is all good.

Including the mother is all good, but there has to be a firm frank discussion there. I’d still restrict that iPad! If she buys a new one and totally undermines you then that is very unfortunate.

Unfortunately pretending that the WiFi is down is no long term answer and will be difficult for him to manage too. He will not be able to do anything or watch anything and he will be frustrated until you fix it. Then wonder why you can’t.

To be honest he sounds like a fairly accommodating boy with a lot of emotional regulation. Good luck!