Nephew with possible Aspergers: How to talk to his Mum

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My question is quite simple, really. I do not think my 3.5 year old nephew is neurotypical but having raised the issue with my sister a few times over the last 18 months, as supportively as possible, I don't know what to do so does anyone have any advice? I realize of course, this seems an utterly arrogant position - thinking I know her son better than she does - but my best assessment is that she is in denial.

I would like to stress, my nephew is totally awesome. Just as he is. My concern is not about giving him a label but about understanding him so parenting responses are appropriate for HIM. I'd also like to stress that my sister is a wonderful, patient, loving mother. His behavior does have a tendency to build up stress though, so I used to take him for a weekend, or even a week, when I could see it was getting too much. (She split up with her partner abt 2 months ago so they are now both living with me.) My sister also has a spinal injury so the physicality of his behavior is extremely difficult and could possibly cause further debilitating damage.

I should probably describe the things which make me think Aspergers/ASD might be present. (I should also mention that he has a severely autistic uncle on his father's side, though the family attribute this to a forceps birth.)

As an infant there were a couple of things which struck me as 'odd'. One was the length of time it took for him to acknowledge my presence. I'd seen him 2 or 3 times a week since birth. The first time he smiled at my arrival was at about 8 months. He was always happy, and even cuddles were okay, just not very interactive. If he didn't want to be held though, like being picked up and taken away from a toy, he would go utterly rigid. The other thing was the length of time he'd just stare off into space and randomly burst into hysterical giggling. This was actually quite delightful and infectious, of course. (His laughter is still quite detached from any stimuli I observe and when laughing 'socially' the sound is fake and exaggerated.)

As a toddler, he often would just run around and around the backyard, then hide in the 'jungle' for a while, then back to running around or spinning. He had very low response to getting hurt and was rather clumsy. He often appeared 'deaf' (hearing has been tested) when being called, particularly when called sharply. If made to come, he avoided eye contact. (He is pretty much still like this, though he has some play skills now and good focus when drawing or writing. Pretend play began last month and he loves dot-to-dots.)

He was 2 when I first tentatively raised a possible developmental issue with my sister, focused primarily on speech delay.

At 2, he had very few words, and mama and dada were the only ones I could always understand. When he did attempt other words, his mixing up of consonants and vowel sounds, or reversing/dropping syllables did not strike me as 'typical' errors though they seemed to have some consistency for him. He also had an amazing facility for mimicking melodies and would 'sing' them over and over to himself. He's always seemed to do this rather than babble. He wasn't nodding for yes or shaking his head for no. 

He was due for his 2yr old check up at maternal health, so I suggested it might be good to discuss it there and get a referral to a speech pathologist for some advice and they could assess if there was anything to be concerned about. I said it could be something totally simple and easily rectified with a little know-how. I mentioned that his frequent choking on food might mean the muscles used for speech could be the problem. But I also mentioned his arm flapping and toe walking, not as 'red flags' - he was only 2 - as something to consider. So my sister cancelled the 2yo checkup and hasn't been to back to maternal health since.

Since then, his speech has improved a lot and we can actually have conversations, though they aren't necessarily as smoothly flowing with the give and take as might seem 'normal'. That requires some extra effort. Having him answer questions is sometimes okay.  "What did I just say?" is almost always a problem though and teaching is difficult. (For example: 'What do you do when someone talks to you? You listen!" took about 45 minutes of repeating to get him to answer with "You listen" instead of "Don't know". And it required more work after that to get it to actually stick.)

The arm flapping, too, is less frequent these days. More often, he just twists his hands and fingers rhythmically, as he has done since infancy.

The biggest issue though, is the 'tantrums'. There is biting and kicking and hitting and shoving. And tearing his room apart too, during the worst of them. But they look nothing like my son's tantrums. My nephew just seems out of control, a little maniacal. And the screaming is interspersed with blowing raspberries, hysterical laughter, fake coughing... A whole range of non-temper things. They also usually don't occur in a direct relation to being told, "No". He gets silly and stops paying attention to anything around him, flailing and falling all over the place. We can then either get him to calm down. Or we can't. I think this might be meltdowns, though I know I'm not qualified to judge. My sister blames it on "he's tired", and it does look a little like that. But he's not tired when it happens at 9am, and he's not tired when he's only been up from a nap for an hour or so. A not-at-home example would be if we don't comment on the 7/11 sign (he loves numbers) when driving passed it, or if we go a different way. The screaming then - if it gets to that point - sounds very much like stress to me, and nothing like a young child trying to exert control.

Since he's been living here, I've twice had to physically restrain him, as gently as possible, on my knees until he calmed so that he wouldn't hurt himself. All the while being spat on, and bitten and head-butted. While writing this post, I've twice had to intervene to stop him from hurting my sister. I encourage him to deep breathe when I can get through to him, and I let him choose whether he wants help or not. Sometimes we hold hands and do it together but mostly he calms more quickly in his room alone. 

Other possible? issues would be his inability to tell if he's done a poo, or needs to. He complains of headaches while pointing to his tummy although he understands the words. He says 'you're hurting me' when nothing identifiable could be hurting him. He sometimes complains of "too loud" in an agitated way if we have visitors and are all talking. Not being allowed to interrupt is also a problem, sometimes like an NT child, but also sometimes in a stressed way. He also seems to have some more trouble distinguishing between real and pretend than usual for his age, I think, and is a bit more literal too.

There are so many things I haven't listed here which alone might seem typical but all together seem like a pattern to me. Or maybe I'm just nuts. 

As I said, I've mentioned it to my sister a few times over the last 18 months. But I've also tried to respect her not wanting to talk about it. Because what else can I do? About two weeks ago it came up again b/c I'd mentioned a friend of mine (who has experience with ASD kids) suggested a few things about how to handle his behaviour, including not to force eye contact. When my sister asked why, I hedged. Later that night, because I hate being a liar, I did say it was because my friend thinks it sounds like high-functioning Aspergers so we had another, pretty emotional talk. 

The things that came out of that conversation, with tears, were that she doesn't want him to be labelled (fair enough), that if there is something "wrong" with him it would be all her fault (she's a smoker), and that if there is something "wrong" with him it "would mean he's the stupid one".

To explain this last, I should say that we were both abused as children and her self-esteem was battered by comparisons to me. The recent relationship breakup has also put a lot of strain on her. (A large part of the reason for the breakup was the lack of parenting help from her partner.) I also think for many, the possibility of a diagnosis is very scary. I think the fear was talking. And with her spinal injury, I think her fear of not being able to cope is amplified. So that's my 'understanding' response. 

But right then I was too livid to even begin to express my anger that she would visit that kind of comparison upon either of our children. Or that she would think a label would make him anything other than her wonderful son. So, thinking that shaming her by pointing out how horrible what she'd said was would not be of any help, I simply pointed out emphatically how totally NOT stupid he is. He's advanced with numbers, has excellent fine motor skills - he writes the alphabet much more neatly than my 5.5yr old etc etc. He is a very bright boy. Bright and clever and joyous. And even if he wasn't those things, he would still be himself. Which is all that matters.

I am so sorry this post is so long. There's a certain element of 'getting it out' since I can't really discuss it openly without my sister being defensive. And I do kind of know that the answer to my question, "What can I do?" is pretty much "Nothing."

But I love my nephew and I believe early intervention can be really helpful. Not just for him, but to help my sister keep his behaviors in perspective and react to it appropriately - like it is his anxiety and his pleasures - and not willfulness or intentional hurt. As I said, she is a loving, patient mum. But motherhood is emotionally draining with even the easiest of children. I think that the support that comes with a label (of whatever) would help them both.

If you have any advice, or even a story to share that might make me not feel alone (I wrote this in tears because for me the stress is in NOT doing anything), I would appreciate it. Or even if there is nothing to say, thank you for listening.

La.

My sister in law refuses to believe that her kids have Asperger's. She has two daughters that are obviously Aspie. I am the only one in the Family besides my Mom and my kids and husband (of course) who have accepted that there is Autism in the family at all. I have two Aspies out of my five kids, I have Asperger's and I was diagnosed after my youngest was diagnosed with classic Autism at nearly three years old (non verbal and severe). One of my nieces has been diagnosed ADHD which my brother and his wife accept.....it is more socially acceptable after all. My brother would definitely be diagnosed if he went for a evaluation but he does well in his job and right now from what I can tell because I have been cut off from him, mainly due to his wife, that he is not too bothered by his sensory issues and seems to control his anxiety by indulging in his special interests. My older brother is more high functioning than my younger brother and I but could be diagnosed and is more like me that I thought him to be. He does struggle with his anxiety but he is far more social that my younger brother and I.

I think the only thing you can do is wait it out and eventually your nephew will be diagnosed if he is severe enough for the school to see and it sounds as though he is. The lashing out at his Mother may be because he is frustrated because she can not do the things she used to do because of her injury but if he is violent, this will certainly be cause for them to want to assess him.
Otherwise if you can get you sister to take him to the doctor maybe you can slip the doctor a note? She is obviously in denial and who could blame her? She has lost a lot and now feels that she is also loosing her child. I have a spinal disease (Ankylosing Spondylitis) actually I may have another joint disease on top of that and severe nerve damage and my spine is deformed as my joints fuse. I have been in very serious chronic pain for nearly 4 years now and I recently lost my oldest son. You sister is probably depressed and very much as I am....like an open wound. Having something that she considers "wrong" with her child is pouring salt in the wound. However you also have your nephew to think about.

This is very difficult and I wish I had a easy answer but I dont. I hope you find one. Have you ever seen the Temple Grandin movie? It is how I got my now 19 year old to accept her Asperger's she saw herself in Temple and realized that no matter what, she could be whatever she wanted to be and she is far more interesting and intelligent than many typical people are.....not to be offensive to typical people but we do get called lots of nasty names by some of them and its a good thing sometimes to know that you are different and its ok and you are not those things that they call you. They just dont understand, its our job to teach just as Temple Grandin has taught many people what it is really like to be Autistic. Most of societies views of Autism are ugly and just wrong. You sister needs to see more of the positive and less of the negative. They told me my daughter may not speak, you can see her videos that i started making at age 5 on youtube under Aspiemom42. I also have started making videos as I am trapped in my bed....I made one to the song "Where is the Love?" by the Black Eyed Peas and I made a tribute video to my son for his girlfriend. My daughter started speaking between 3 and 4 years old. She now also speaks some French.

Thanks so much, liloleme, for your reply. It was really helpful.

It's interesting about the ADHD. One of the things she threw at me in the last conversation was "If there's anything wrong with him at all, it's ADHD". And yes, she is depressed, though that seems to be improving a bit now and she's even talked about getting some counselling for herself, which would be great. Not being able to sit and play with him on the floor for any length of time and things like that does make her feel horribly guilty too. Her injury predates his birth, but what you've said about reasons for him lashing out at her still makes sense, I think. All together, I try to be sympathetic -and not add to her stress- as much as possible. It is hard to balance that while thinking about his needs too.

I wish she understood more about ASD. Not that I am an expert but the first time I mentioned it it was "He cuddles and smiles so he isn't on the spectrum." He's just started 3yo kindergarten now, so hopefully if the teacher's start seeing issues they'll raise them with her as you say.

In the meantime, I'll just do the best I can for both of them - and educate myself as much as possible. But I must admit to some resentment about the responsibility placed on me when a better understanding between them would go a long way. He is more responsive to me when the problem behaviours come out. Before she split with her partner, both of them, when he was having a "tantrum" would tell him they were going to call me to come over. I love my nephew dearly. He is a joy. But he isn't 'mine' so there are limits to what I can do all by myself.

Thank you again, so much, for sharing your story with me. I hope you have lots of love and support in your life to help you through.

You are an amazing aunt! While your sister may not be able to appreciate all you're doing, because of her depression and guilt, at some level, I'm sure she does.

From what you've described, it sounds very likely that your nephew is on the spectrum, but for now, you might have to consider that irrelevant when you're talking to your sister. It's great that she's considering starting therapy for herself, and I would encourage that, gently but strongly. When you're talking about your nephew, it might be best to focus more on specific issues, as they come up, rather than on diagnoses, which are more global (and scary). Speech is usually one of the least threatening "issues" to address, so it was a good one to start with. You probably scared her when you threw in the toe walking and arm flapping. Try to stay focused on only one thing at a time - even though once you get her willing to talk, you're going to feel like you want to grab the opportunity to keep going, like you're on a roll. Don't. You will scare her. If each conversation is manageable, it will make the next conversation one she won't dread as much.

You know that whether or not your nephew is diagnosed with ASD, he will still be the same person he is now, without the diagnosis. Your sister isn't "there" yet. It will take time for her to get there. It's a tough balancing act, between the time she needs and the brief time he has as a young child. If you can get her back to the doctor, so he can receive the medical oversight he needs (and is entitled to), and maybe start with speech, if that's something he still needs (it may be more pragmatics, if his articulation is improving enough). Once a child is "introduced" into the world of early childhood intervention, one specialty tends to lead to the next, even if the parent doesn't independently see the need. So if you can get your sister "in the door," the system may take over the rest.

By the way, saying "headache" and pointing to his stomach is probably his way of telling you he has a stomachache. Many young children associate "headache" with pain, not necessarily in the head. So they will have a "headache" wherever the pain is - their head, their stomach, their leg ...

Hang in there. You sound so patient, calm and rational - in a very stressful situation.

You are a very caring aunt and sister. I just would like to comment on the stomach thing your nephew does and says "headache" as my daughter would do this too. She is 4 and still not completely potty trained as we just found out in the fall she has an intolerance to gluten (wheat) and casein (milk) which is quite common with autistic people. She would hardly ever tell us if she had to go or if she did. Once we found out that was the problem it's been a bit easier, but she is now delayed physically with other things since we've been stuck on the potty training for years.

I would say, that for now, let it be. You've told your sister what you think, it's out there, now it's up to her what she does from here. I was on the receiving end from my sister-in-law and mom. Up until they said something, I didn't suspect anything wrong with my son, but since he's my first born and we have a long line of smart people, I didn't think he had an ASD. The idea scared me to pieces, and actually has left a rift between my SIL and myself, because she wouldn't let it go. It was like every little quirky thing he did, she was looking at him funny and looking at me, like, "See?" It got to where I didn't want to be around her because of the "judgement" she was putting on me and my son. Not saying that you're doing that, but just speaking from my experience with my SIL. I eventually had my son evaluated and he doesn't appear to be on the spectrum, or if he is, it's very mild right now. It doesn't mean I'm going to stop monitoring him. Obviously, if things get worse as he gets older, we will revisit it. My point is, she is still his mom so she has to be the one to make the move. If she brings it up and wants to talk about it, fine, but like I said, you've said your piece and it IS very scary to consider that things may not be totally normal with your child. You are a wonderful caring aunt and sister. Denial is a big part of being a parent, I think. Just keep being there for your sister and your nephew as much as you can without always having to parent for her.

Others have given excellent advice so I don't have much to say but I wanted to pull this out. FWIW. Several studies have been conducted to try to find an environmental cause for autism. None have been able to find any conclusive evidence that environmental factors such as smoking are to blame. Smoking and low birth weight, yes, but there has not been any link found between smoking and autism. I say this not to defend smoking during pregnancy or exposing children to second hand smoke but just to say that if your nephew is autistic, your sister shouldn't feel guilty or ashamed because in all likelihood, there is nothing she DID to cause it. Also, we all have our strengths and weaknesses and different does not equal "wrong". Here is where people often speculate about famous smart people like Einstein and Bill Gates who may or may not be/have been Aspies but whether they are or not isn't so much the point. Einstein apparently couldn't tie his shoes but he gave us the theory of relativity. Strengths and weaknesses, we all have them though for most of us it is less extreme than Einstein. I guess I just say all of this as food for thought for you for possible future conversations with your sister. I hope that she does come out of her denial because there really is help available. The meltdowns are a prime example of something that can be mitigated with some intervention. Keep your chin up, you are doing the right thing by being there for your sister and your nephew!

Sorry for my slow response. After the difficult day when I wrote this post, I took my nephew to the beach yesterday since my sister was in a lot of pain. We had a great day but it was thoroughly exhausting, in a good way.

I really appreciate all your answers. I can't overstate how helpful they have all been. It has been a huge relief to share that burden of /trying/ to be "patient, rational and calm".

vat and snekane, your comments were both very perceptive, and helped me clear my own stress and focus on supporting my sister again. That fear that I might have pushed too hard and eliminated myself as someone 'safe' to talk to has always been at the back of my mind.

About a month ago, when my nephew was in that loopy mode and we were talking about how to handle it, I'd said "It looks like stimming to me". She asked what that meant. I explained a little and we moved on.

This morning, out of the blue, my sister told me she'd done some research on stimming and possible food intolerances - as you mentioned, 3AS1NT - and said she was going to go to maternal health and discuss it with them. She prefaced this with "I don't want to discuss it, but..." so that was it, of course.

But I'm SO happy that she can still talk to me about it and also that she'll be reaching out to seek advice from people far more qualified than I am to help, and to diagnose as well, if that is necessary. 

It seems like we are now a bit closer to being on the same page, a much easier position to work together from.

Bombaloo, I agree with what you've said completely. During that conversation, I did try to point several of those things out. My own son was born with a cleft palate and I know how much pressure and blame is put on women regardless of what the science actually says. I wish that would change.

I'd also like to say, just because it seems fair, there have been times in our lives when the situation has been the reverse and my sister has been the one supporting (and feeling frustrated by) me. Our relationship is often fraught because of the past and because our temperaments are so widely divergent but we both work really hard at it and during the worst of times, that hard work is what we both hold on to to maintain our respect for each other.

Again, I can't thank you all enough for listening to me when I really needed it. Isn't it funny how things often turn around just when you feel like you're at breaking point?

My sincere gratitude,

La

Just so I understand, is maternal health where mothers and children go for check ups? Did he not have a 2 year check up, and then has not been to a pediatrician since?

As much as you are concerned about your nephew, which is cool and awesome, it seems by broaching the subject with your sister over the last 18 months, it has put her on the defensive. If she is not seeking medical care for your nephew when he needs it because she is afraid of addressing this, this is a very bad thing.

If this is what is happening, I would drop the focus on ASD/ADD and just talk about all kids needing check ups and shots etc. so she will at least take him to a pediatrician. I do not know where you are, but generally pediatricians look for unusual behaviors and screen for things like autism. So if by backing off the spectrum stuff, you can get her to take him to a doctor, that may be more productive than continuing to push her on the ASD. Even without her asking pertinent questions, the doctor may notice things that are "different" and give your nephew a referral.

If I am misunderstanding, and he is going to a pediatrician and has not been "discovered," you may still have to let it drop for awhile. She is not receptive and she seems to react by becoming defensive.

This is so true! Sometimes just when I feel like I am going to crack, DS will finally get something that we have been struggling with for months. He moves on over the hurdle and I sometimes feel like he is looking back at me and saying "What? It was easy, see!" and in this image I am standing there feeling worn down but happy and trying to gather my strength for the next hurdle.

Hi ASDmommyASDkid,

Just to clarify, in Australia we have Maternal & Child Health Centres (maternal health) which are run, in my state, by the Department of Education & Early Childhood Development. (This is also the Department which provides services for autism.)

The centres are staffed by specialist nurses and all Australian children see them at 10 stages - a home visit, then check ups at 2, 4 and 8 weeks, 4, 8, 12 and 18 months, 2 and 3 1/2 years of age. The nurses check both physical development and milestones. They also screen all Mums for post-natal depression and you can discuss any parenting/behavioural issues with them and get advice or referrals to other services if you need them. They also help with information about enrolling in kindergarten, child care services, local playgroups and activities and things like that. Basically, maternal health is the hub that connects parents and kids to every conceivable service they might want or need in the early years.

It is just the 2 year old visit my sister missed and she has now - thank goodness! - said she will be going in for the 3.5yr old one which is a long consultation with a lot of tests so hopefully that will be the one which links my nephew in to all the early intervention support available.

Regarding paediatricians, in Australia that is a medical speciality a lot of parents never require. Families just go to their local GPs (equivalent of US 'family practioner' I think) and my sister does take him when she needs to, like if he has an ear infection or something, but the GPs don't necessarily pick up on larger issues when you go there for a specific problem. As for immunisation, local councils run immunisation days at various community centres at least once a month so my nephew is all up to date with those. We have universal health care too so we are never in a position where medical costs might be a barrier for getting the services out children need. All these things are free for everyone.

I would feel just horrible if I had created a situation where my nephew wasn't even getting basic medical care because I had scared my sister. Just horrible. But it was just that one checkup. I am certain she would have been referred to a speech pathologist then, so I guess we are a year and a half behind and I guess that's my fault. But I can't change that now. I can only be happy that she is finally ready to consider that there might be a problem now and get help. And I know that back then she would not have been as honest with the nurse as it seems she is ready to be now. She was already defensive and talking him up and explaining away problems before I ever raised the issue.

I not only agree, I think you can take this farther in the short term: do what Tony Attwood suggests adults do when explaining their autism, rather than using the word, saying: "I'm the kind of person who..."

So, for instance, if your sister is complaining about tantrums, you might say "You know, some kids get overstimulated easily. Is he bothered by loud noises? Maybe if you gave him a quiet place to go when things are noisy, he might be able to manage better," or "I've heard that some kids really need things to be predictable. I (saw, heard, read, whatever you come up with) that some parents make a visual schedule with pictures on it to make sure their kids understand how the day is going to go."

Lots of people are really scared by the A-word, in part because autism has been so grossly misrepresented in the media for so long. If you're a parent, it's a lot less frightening if you think about it in terms of responding to your kids' needs; that may help her ease into the idea. It worries me that there are so many quick-fix, charlatan "cures" out there, when really changing your perspective on your child's needs is what will make the biggest improvement in your life.

I just wanted to make sure I did not accidently say something I did not intend (I am an Aspie so this happens, sometimes) I did not in way mean that you did anything wrong or I felt you should feel guilty. My point was intended only to be about dealing with the psychology of your sister's reaction to your perfectly reasonable suggestions.

When you start to suspect (or people point out) that things may be different about your child there are any number of emotion-based responses a person might have. These are not predictable in advance. I was only suggesting strategies for going forward, based on my perceptions of what her reaction has been thus far. Sometimes it takes awhile for it to sink in and for a parent to accept. Like it or not (I don't) there is a societal stigma that some people are afraid of, and honestly parents just don't naturally accept that his/her child is not perfect, sometimes, without overwhelming evidence and sometimes a bit of egg shell walking.

No reflection on you was intended.

I am glad that she agreed to the 3.5 year visit. This will probably clarify things, and hopefully she will be at a point where she will accept whatever the results are.