my friend's son has asperger's and his behaviour is worrying her.
March 18, 2013 5:17 AM   Subscribe

Asking for a dear Australian friend, "Ariane" who feels she has nowhere else to turn. Any and all advice gratefully received. "My son Henry is 19 years old and has Aspergers. He has a little brother George who is 12 and a sister Lily who is 2 1/2. We all live at home with my partner (who is the biological father of Lily).

"Henry although very capable at written tasks choosing not to speak most the time. He rarely engages in conversation with us or with anyone. There are definite anxiety issues around conversation or in fact asking for help however, he does talk to George and I hear them discussing things sometimes.

Henry is very capable in many ways, he can dress himself, feed himself, can catch public transport to and from his training centre. He has undertaken significant amounts of work experience and his job coaches think he is a well mannered and capable young man. We don't often see that side of him at home.

The main reason why I'm writing is that for many years Henry has had an attraction to younger kids. He has never acted inappropriately however he has a tendency to get too close, grabbing the child's face to kiss them (mostly cousins or siblings). He sometimes lingers too close when I am changing Lily or giving her a bath. This makes my partner very edgy and we have fought over the issue many times. My partner has said a few things that really upset me, things along the lines that he would never trust my son with Lily alone and not to leave them in the same room together for even a brief minute.

The other worrying issue is the fact that Henry has often tried the strangle his younger brother , very similar to the way Homer Simpson does with Bart in the series. Henry has been cautioned, warned and threatened with being kicked out of home for his actions and since the last episode we have often tried to keep the boys apart out of fear. George has also been asked to tell us if Henry acts physically appropriate toward him. Something that George says has not happened. But we do know that in the past George has lied for Henry out of loyalty and possibly fear. They now have separate bedrooms.

The other issue is that Henry has access to the Internet but the only thing that he seems to view are youtube videos of kids farting. He has always laughed at loud noises, either sneezes, coughs, burbs or farts. A very juvenile thing that he never quite grew out of. I acknowledge that his diagnosis makes him more sensitive to sounds but to search for something so specific ie little girls farting? I had a thought then that perhaps he feels this is not an issue because they are young and that it would be worse is he was searching for women farting. Not sure. We have tried to ban his access to the web or limit it to only being able to view the web when he is in the company of other family members. And not going into his room and viewing things on his phone. His phone is a whole other story. Argh.

Basically, I just want to know if anyone has had similar experiences or can explain the diagnosis with regard to him not understanding physical boundaries and how to help him. Also should I discourage him with the internet issues. "

Please be gentle with her, she's never been to this site before. The first she'll ever know of it is what she reads from you. I asked her to create a throwaway account and it is

Thanks lovely metafilter folk, I know you can help and support her.
posted by taff to Human Relations (16 answers total) 4 users marked this as a favorite
I have had irregular contact with folk who have Aspergers and Autism, so I feel like I ought to put an IANYL-style disclaimer up front.

My limited experience would make me inclined to suggest that the YouTube videos are not your problem here - if that's where he finds humour then why not. I watch clips of comedians joking about pretty grim things and no-one seems to mind. I think it's understandable that you should find it pretty distasteful, and there can be something slightly repulsive about adults who find such things funny, but it's probably not doing anyone any harm.

The attraction to young kids is a little further toward the danger point but could still very possibly simply be curiosity (in the case of watching you with your young daughter - I've known Aspie kids who just don't understand that there is a gender other than their own til they're quite old, and when they realise it, they're fascinated) and the weird confusion of puberty (especially for someone who may not understand fully what's happening) that makes you long for contact - perhaps he sees younger kids as less risky to kiss than people who might react badly to him seeking this contact that he wants.

However the strangling thing is not cool. This is the sort of behaviour for which I would definitely be seeking a therapist's assessment of. It may be that he needs to spend some time with a therapist regularly who specialises in young adults with Aspergers/learning difficulties so that they can assess the risk to your other kids and, indeed, yourself.
posted by greenish at 5:34 AM on March 18, 2013

My partner has said a few things that really upset me, things along the lines that he would never trust my son with Lily alone and not to leave them in the same room together for even a brief minute.

I'm sure I don't have to tell you that your daughter's right to feel safe (or even just, not weirded out) by her gender and sexuality supersedes any hurt feelings (on your part or Henry's) at a suggestion that he might be capable, unwittingly or not, or sexual abuse. Even if his curiosity is childish and innocent, it's subjectively much, much creepier to deal with a grown man (disabled or not) who has "play doctor" urges, than another age peer (preschool, elementary school, etc.). I'm not saying this to be unkind; I'm speaking of someone who remembers being the very uncomfortable subject of sexual curiosity as a young girl (that never crossed the line from "just looking" or "OK touch" pats on the shoulder or back) by older, developmentally disabled males. Your partner isn't calling Henry a child molester--he just wants just to give her time and space before she has to learn how much unwanted attention comes just from presenting as female in the outside world. I can't imagine being sexualized like that in my own home by someone significantly older. I know that may seem mean or unfair to you and to Henry, but there it is.
posted by availablelight at 5:47 AM on March 18, 2013 [36 favorites]

My son is so much younger than hers, but I will always, always, always, always recommend ABA therapy for people with any type of ASD, and especially if they haven't received it before.

What it sounds like to me is that Henry is trying to be social with the types of people he can most easily relate to --- younger children. But he doesn't understand the social implications of someone his age "lingering" around those children and not realizing what games are appropriate or not.

I can't stress this enough: He Needs Help Navigating The Social Implications of His Behavior.

Here is an Australian based resource.

Can ABA help people Henry's age? Yes.

I highly recommend she seek out an ABA therapist for Henry, and I bet over time with the right therapist and right treatment plan, these worrying behaviors will decrease as more appropriate behaviors increase.
posted by zizzle at 5:52 AM on March 18, 2013 [12 favorites]

I'm going to second ABA and definitly some sort of social skills training, both with other young adults with special needs and without.
posted by missriss89 at 6:24 AM on March 18, 2013 [1 favorite]

You've gotten a lot of excellent advice for ways in which your friend can help her son hopefully overcome his these destructive habits, but that so very much needs to be not her priority and not yours.

"He has never acted inappropriately however he has a tendency to get too close, grabbing the child's face to kiss them (mostly cousins or siblings)."

This sentence is such a wild contradiction in terms that it should lead your friend to seriously reconsider her judgement in this.

Henry only needs to be with George alone for three minutes to kill him, three minutes without oxygen - for most of which he would look oh so temptingly like Bart Simpson - is all that is needed for George to be gone forever. This is acting inappropriately towards children in a dramatic way and your friend's partner is absolutely right here. Even then, that your friend's partner allows your friend's son into his home with his daughter at all, much less with someone who waffles about providing absolute supervision of him, makes his judgement much less your friend's extremely questionable. If only from Henry's clear lack of ability to respect boundaries, much less the specific focus of the way in which he pushes specifically sexual boundaries, Henry should NEVER be alone with Lilly or any other children ever, even for less than a minute - at all period. This is exactly the kind of situation that is the typical source of the sexual abuse of children, and it most typically happens precisely because there are authority figures like your friend who value something more than the safety of the minors in their care. Henry finding better ways to function is important but no where near as important as the safety of the other minors in the care of your friend. Your friend also knows that without a clear line of communication to George, much less Lilly, she doesn't even know how bad it is.

Henry has no business alone in the company of children who would then be totally reliant on his clearly non-functional ability to not hurt them, if your friend for whatever reason cannot take meaningful steps to ensure the safety of the children in her home please do so yourself and contact authorities who can provide resources that will.
posted by Blasdelb at 8:14 AM on March 18, 2013 [29 favorites]

I know a woman who was sexually abused by her autistic older brother when she was very small. It started when she was about 3 and went on until she was about 7, when she finally told her parents what had been happening.

They were, as you can imagine, gutted. They never thought this was even possible. They ended up having to place their son with relatives able to work with him the same way they did, but had they not had that resource, they would have chosen to have him go to a care center.

They found out years later that he'd had similar contact with younger schoolmates and a couple of neighbour kids. They felt sick.

He didn't understand it was wrong, per se, but did know it was something that adults shouldn't be in on, since they seemed to worry about his interaction with other children in general.

This all happened in the '70s. The friend had always had access to the memories and felt disgust about her body and touching from other people, no matter how benign or casual. In fact, it had led to some assumption that she was autistic, too. She had tried to reference some of this before she was 7, but it wasn't understood (or, in a couple of cases, brushed off). When I met her, we were in our 20s and she was dealing with the inevitable fall-out through therapy and curtailed ties to her family. Not because she didn't love them, and not because they hadn't tried to make things better afterward, but just because she needed that space after realising why certain things were happening in her life to work through the very complex feelings she had about them and what had been done to her.

What I'm probably clumsily trying to say here is that your husband's instincts on this should be trusted. Something needs to be done. This needs to be taken very seriously. Just because your son wouldn't act with malice doesn't mean he wouldn't act. Being more comfortable with small children because they are less threatening and acting in even vaguely intimate ways with them is actually a massive red flag that should be setting off alarms and triggering serious next steps to keep everyone safe. If something happened to your daughter, you would be devastated. If your son were charged with anything because of doing something to another child, the same would be true. Both are possible. Please don't take this lightly or allow the fear of what might happen if he is helped to correct or prevent this keep you from taking the necessary steps. It would be for the good of all.

I'm also concerned that the younger son is having to remain in proximity to someone who has been so violent with him. I know that it is very, very hard to ever picture one child doing serious harm to another and especially hard to consider some of the hard steps that might need to be taken, but the potential for negatively impacting lives and well-being here is huge. This has happened before, and the survivors are always shattered and spend the rest of their lives questioning themselves or suffering with bitter self-recrimination. No matter how much love there is, there are certain behaviours that require us to make heartrending choices to ensure that everyone else is safe and free of violation.

Please know that I say this all with respect and sympathy. I can't imagine being on the parent's side of this. My heart goes out to you and your family. I hope that you can see your way to take the necessary yet difficult steps with love and acceptance.
posted by batmonkey at 8:26 AM on March 18, 2013 [42 favorites]

I think that this is an issue that cannot be navigated solo. Your friend needs to come together with her partner and really talk about this. Right now, it appears that each person is lining up behind "their" child without being really intentional about what is best for the family as a whole.

Is it possible financially to bring in a home health aide? This might help significantly, in providing supervision for Henry (and keeping him away from Lily and George) while still allowing him to live at home. But I think your friend might need to consider if it is in fact safe to have him living alone. Perhaps group living might also be a possibility?
posted by corb at 8:53 AM on March 18, 2013 [4 favorites]

I know this advice may sound strange, but look into the GAPS book by Dr. Natasha Campbell-McBride ("Gut and Psychology Syndrome", I think). Many parents of Autistic kids swear by it and their kids behavior improves 100-fold while following that diet, or even by just being gluten-free + probiotics/ferments.
posted by Neekee at 9:04 AM on March 18, 2013 [1 favorite]

Also, please make sure that the coaches at his work are aware of this. Even if its just like a warehouse full of adults or whatever, they need to be told in a way that is not sugar coated so that they can protect the community around him.
posted by Blasdelb at 9:24 AM on March 18, 2013 [3 favorites]

I came back to comment again because I had a nagging feeling after my first answer that I'd underplayed my worries about his behaviour around your daughter too much, and well, never mind because everyone has done a better job than I did of elaborating on that.

My mistake up there was to just try and explain why he might be acting the way he is - the much more important point is what potential harm could come of it, and I think it is super important to utterly minimise the risk that he could, however unintentionally, harm your other children in some way.
posted by greenish at 9:37 AM on March 18, 2013 [4 favorites]

Grabbing children to kiss them is ALREADY incredibly inappropriate behavior. Pretending to strangle his younger brother is ALREADY incredibly inappropriate behavior.

Your friend and her husband need to be very clear and specific about this behavior with everyone on Henry's care team, including his job coaches. They're not doing Henry any favors by not flagging this stuff and getting him professional interventions right now, and they're doing a real disservice to George and Lily and all the children Henry encounters.
posted by Sidhedevil at 10:13 AM on March 18, 2013 [7 favorites]

Thank you so much for all the answers so far. I've sent her the link. I'm sure she'll have thoughts during the day. It's early on Tuesday morning here.

Can I ask for some answers directed specifically to the paragraph below?(it is the crux of her initial question, but not the only important thing, she's not a member, the more comprehensive advice for all of the problem she can get, the better. Thank you, again.)

"Basically, I just want to know if anyone has had similar experiences or can explain the diagnosis with regard to him not understanding physical boundaries and how to help him. Also should I discourage him with the internet issues."
posted by taff at 1:22 PM on March 18, 2013

I don't really know what she wants to understand with her last paragraph.

Basically, all forms of ASD come with social challenges where the people with them do not know how to process social situations, including social situations in which physical contact is present.

Some people with autism get senosrily overwhelmed. Lights are too bright. Background noise is too loud. Too many people around. And they sit in a corner with their hands on their ears and rock back and forth. This is a bit stereotypical, but it happens. That is sensory defensiveness. They are trying to protect themselves from sensory input because they can't handle it.

The other side of that is that some people with autism are sensory seeking. Rather than shut out input, they want input. My son, for example, didn't have much language when he was two or even three. But if we were outside, he'd talk more. If he could put his hands in dirt, he'd suddenly burst out with a three word sentence. He would need some kinds of sensory input in order to process certain types of situation.

What this means is that, especially for someone who is sensory seeking instead of defensive, is they don't register how their seeking could be harmful. One example was someone I know when she was small child squeezed a hamster against her chest really tightly. She just remembered that doing it felt really good. She didn't understand the consequences to the hamster. (I think the hamster turned out okay because another adult intervened). So her sensory seeking nature led her to engage in an inappropriate activity with the hamster. She didn't have the capacity to understand why that was wrong.

What is concerning to me about this post is there's not much mention of what supports are in place for Henry. In an ideal world, what I would do for him is:

1. Private ABA therapy
2. Some type of group activity that is integrated with special needs and neurotypical people
3. Speech therapy to encourage more talking
4. A full neruodevelopmental work up to retest the diagnosis and see what the testing psychologist would recommend
5. Henry's step parent or step parent figure doesn't seem to be helping the situation. I think the entire family could benefit from family counseling to work out the dynamics better

I don't like the speech regression, and I don't like that Henry doesn't seem to socialize with people outside his family that much (that could just be how the question was phrased). '

So basically, I think Henry --- and the family -- needs a lot more supports. And I think doing anything less than the above is failing everyone.
posted by zizzle at 1:41 PM on March 18, 2013 [4 favorites]

One more thing to add, from being in a similar position - Henry is very vulnerable and she has spent years protecting, helping and advocating for him. It is incredibly hard to balance that with the need to also protect the other children, especially if they are comparatively normal. She has to - Henry is dangerous to his siblings and other children, but it is hard.

You have years of shielding this child, translating the world for this child, worrying about their future, being often one of very few or the only person who will defend and support this child, and suddenly you have to mentally and emotionally almost switch sides and see this child as a threat. Part of you will feel like you are betraying Henry for even listening to other people talk about him as a threat, let alone taking actions - George needs a lock on his door, Lily should never be alone with Henry, you need internet tracking software - which will break your heart.

But it is part of protecting Henry as a young adult. Getting help and putting in limits now will keep Henry from a terrible mistake that could lead to jail and a lifetime of regret. It's just a hard thing to wrap your head around at first. She needs to be able to tell people outside the family who work with Henry so they can help, and to know that is not betraying him, but helping him.

The mum could probably benefit from family therapy with just her partner at first so that they can both understand that they are trying to protect their children and how tough this is for them both. They need to be on the same page for all their children, not split into protecting one against the others.
posted by viggorlijah at 5:32 PM on March 18, 2013 [13 favorites]

It might be helpful for Henry to meet some friends his own age with ASD. is huge, he could sit there and chat and read all day with other people from around the world with ASD and very likely meet some people in your area. That might get the focus off of younger kids and into peers who are on the same page developmentally.

My daughter is autistic and as much as we all love her, she is NEVER left alone with younger children/siblings because her head doesn't register 'danger' at all, for herself or for others. It's not cruelty towards her, it's just part of life care-taking someone who has ASD.
posted by tenaciousmoon at 9:14 PM on March 18, 2013 [1 favorite]

Hi everyone. I speak now as me, not Ariane, the person I posted for.
She asked me to add my own thoughts.... and I've now spoken to a child psychologist who works with the Department of Community Services.

I'm adding the advice here I was given for future concerned, frightened and confused parents in similar situations. And of course for Ariane.

The psychologist gave some excellent advice and the first step is a safety plan for Henry. A safety plan that has very firm boundaries and is not ever negotiable. Part of that plan would be that for Henry

1) there is no touching of Lily or George or any child at all. No horsing around, no wrestling, no pushing, no hand shakes, no shoulder pats, no hugs. Not touching ever. This is because he has to learn boundaries and the little kids need to know exactly what the rule is and be able to clearly state when it has been broken.

2) Bedrooms and bathrooms are always 100% private. Henry may not approach any person who is in their bedroom or in the bathroom, but may of course call out from outside the closed door. He may not open the door. He may not enter the bedrooms of his siblings. Ever. This is also so the littlies can clearly say that he has been in their room and it leaves no room for ambiguity.

3) Henry should not ever be left alone with a child. This is for the protection of Henry's reputation and the children's boundaries. Henry needs assistance with his regulation and needs therapy so he can function as a healthy adult in a meaningful way going forward. Henry can not learn this with maturity and experience as others might, as he has Aspergers. He will need to be taught by professionals. This is not something he can learn from family members.

Henry needs to have counseling and the best time to do this is before there is an incident that would escalate beyond the control of the family.

I hope you all are reassured that Ariane is a very caring and sensitive parent who is feeling particularly confused and incredibly vulnerable right now. She asked for help, and you've all spoken very clearly. Thank you for your insights. I have offered for her to respond, but at this time she has declined. I can't mark answers as best.... because that's her call. But as me, I'm going to favourite a few.

Once again, thank you.
posted by taff at 1:42 AM on March 20, 2013 [4 favorites]

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