Toddler definitely AS or HFA, but his parents deny

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My wife has a 2-year-old cousin, who in our observation is on the Autism spectrum. Since I am an aspie, and my wife is a former Special Ed teacher, there's no doubt in our minds, that the little fellow is on the spectrum. The problem is, that the parents are the kind who are 100% concerned with their image, and to have any less than a "perfect" baby, is something that they can't accept. They have taken him to therapy, and they have forced all kinds of diagnoses of everything "curable", but will not hear or speak the word Autism. This is very frustrating for those of us who were once in that situation, and were sadly misguided through early childhood due to the denial of others.

This posting is more of a rant, I suppose, than a request for specific answeres... But if there are any thoughts out among the members of this board that might give us any ideas on what to say or do to help the truth come out, we would appreciate it. We'd hate to become enemies with that branch of the family, but we also hate to see what boils down to unintentional neglect of an intelligent little boy.

Charles

Well help him the best you can. Since your wife is special Ed. and You an Aspie perhaps try to help him a little. Example: Mom Dad might not like the word Autism but IMO there's probably nothing wrong with you/wife watching the child and say teaching him social skills or help him with his Autism or issues. Read up on how parents can help a child with Autism and become the "good parent" and when/if you are able to babysit (offer it when you can) then teach him ways to cope/social skills etc.

I am curious as to what current diagnosis the child has from the doctors they have taken him to.

The parents aren't really being specific, other than that the toddler was put in speech therapy, and has been recommended for motor skills therapy by a psychologist.

The basic symptoms he's exhibiting (among many), are that he was very late in speaking, and goes ballistic if anything deviates from a perfectly-timed schedule (meals, sleep/wake-up times, etc)... If anyone tries to touch or pick him up, he screams and cries, and won't make eye contact with anyone (even in the family) except his parents. If anyone smiles at him and looks him in the eye, he screams and cries. He does appear to be at or above normal intelligence, so they're calling him a "normal" child with just a little boost needed in speech and motor skills development. Very similar to my early childhood memories, when I was forced to interact with other toddlers in church preschool, and it is a memory of terror to this day, and I remember being shamed for getting upset and crying if I had to stay up late or wasn't allowed to get up on time, or if anything didn't go as per my regular day.

I am open to the idea that we're all wrong on this boy, but it's hard to think so, based on what we see. What's so frustrating is that it's so obvious that the parents are the type who need to appear "perfect", and that's a terrible detriment to any kind of special needs person. If anyone gets a cold, it's hidden and later denied, and if anything goes wrong in the household, it's always explained clearly as someone else' fault.

Charles

They seem to accept their little boy isn't perfect from their actions, if not their words. It may be less important what they admit verbally than what they actually do. At this age, at least. Do they willingly create and follow the rigid schedules the child seems to need? Do they remove him from stimulation when he is upset and help him self-calm? Are they forcing him into situations that are stressful for him because of their misguided use of terms, or are they honoring what appears to be the choices of their child?

The term isn't everything. There may come a time where the lack of the term begins to dictate inappropriate actions, but is there any evidence of that at this time, or are you reading into it because of what you experienced (which, understandably, you don't want this child to have to go through)?

It can be a difficult position to be in, the outsider seeing something the parents refuse to. Start by looking at the situation pragmatically rather than idealistically, to see where the real gaps are. After that, maybe solutions can be figured out.

my sisters the same, her child is so aspie, but she wont have any of it.

I think you have to let go of people doing what you want, just let go and let them find their own path.

it is frustrating though!

2 is really early on the diagostic end, altho it is possible. when my son was 2, i had a family member and a friend both suggest that he was autistic. we blew it off. we knew there was something different, but didnt think it was autism. for us, it was a combination in that we didnt know the specific diagnostic criteria and that many of the behaviors we were seeing were attributed to normal genetic inheritance because his dad was/is the same way.

if he is going to be getting speech and OT/PT, thats probably all he really needs at this point. as long as they are positively working with his behaviors and getting the basic therapies, he shouldnt be in any danger at 2.

if it is autism, things will become more apparent as he gets older. entrance into the school system often points a big fat arrow at the problem.

if you really want to work on getting them to seriously consider the possibility now, your wife should probably be the one approaching them. it should be cautious and not accusatory, maybe provide them with the diagnostic criteria and more importantly, the traits that fall into that criteria. a break down of the categories and common behaviors that express it.

it wasnt until i had gone over the diagnostic criteria multiple times and learned how they are expressed (lining up toys in straight lines and toe walking are an expression of repetitive and restricted patterns of behavior) that i was able to clearly see how well his specific behaviors matched up with the criteria. and now that we know exactly what we are looking at, we are amazed that the rest of the world cant see it as clearly.

but 2 years ago? i would have argued till i was blue in the face that it wasnt autism.

That's the problem. They keep insisting that he's "in a phase", and that he'll outgrow the need to be on a schedule, and outgrow the eye contact issue. They keep exposing him to the very things which make him uncomfortable, and deliberately slightly change schedules to "get him used to life". We discussed this with the toddler's grandparents (my inlaws), and they agree that this poor kid is being railroaded on a path of discomfort for himeself, and frustration for his family.

Consciously I know that any kind of family opinion sharing or intervention-style discussions, would only lead to family civil war. It makes me feel like when you're sitting behind someone at a red light, where there is a traffic sensor that won't turn it green for you until your car is on the sensor.... And the car in front won't quite move forward enough to trigger the sensor. Your choices are to toot the horn or motion the other driver to advance a few millimeters, and embarrass/anger them, or just sit there as a victim all day long. A lose/lose situation!

This, in a much less tragic way, reminds me of a family I knew several years ago... I was friends with the older brother, who was a bodybuilder, and champion surfer. His little brother died suddenly of an EASILY fixable/preventable heart problem, then a year or two later the mother died of the same, and finally my friend died suddenly at age 29. Why???? Because their religion prohibits medical intervention in any way. The whole family is buried together, sadly, and so young. Why do people act this way? In the case of our family, the problem is not a religious rule, but just a stubborn "perfection" thing.

Charles

First, I am very sorry that you are in such a difficult position. It can be very hard and sit and what what seems like a train wreck coming, and be able to do nothing. However, if he is in speech, and OT I am hoping that some of those professionals will share their observations with the parents. When my aspie son's doctor first mentioned "spectrum disorder" I scoffed at the notion... but truly I had no idea what Autism was aside from ONE child I had known who was low functioning. Does the child see a pediatrician regularly? Hopefully a screening will be done at a well check up. The difference today, vs when you were a child, is that HFA and AS are understood and preschool teachers, therapists, and doctors are all keeping an eye out for it.

You need to consider that you are not the parents.

Save your energy for your own children to raise them and seek diagnoses for them as you wish.

Hopefully the parents are just "going through a phase" and that, as others have suggested, when they hear it from enough professionals who work with the boy, they will come to see reality. He is young and there is a chance that with time the parents will accept the idea that their son is on the spectrum. I think the real tragedy will be if they are still in full denial when he starts school and he fails to thrive in the school environment because they cannot bring themselves to accept a diagnosis of autism. I have been told by my son's teacher and the director of his preschool how amazing they think my husband and I are for accepting DS's diagnosis. Evidently there are a lot of folks out there who deny that anything is different about their child even when it is obvious to those around them.

It sounds like the psychologist is referring them towards the same types of treatment that they might send an autistic child to. The child will likely be recommended to have occupational therapy for sensory issues as well. I suspect (and I could be wrong) that the parents have chosen to make this child's issues a private family matter and don't want to discuss it with anyone. Obviously they know something is going on since the child is seeing doctors. I think they are handling the situation appropriately. Perhaps they already have a diagnosis of autism spectrum disorder but just don't feel comfortable enough, or are just the type of people, who don't want to share it.

It is also possible that the doctor the child is seeing suspects autism but is unsure and just prefers to to treat the symptoms, which is OK.

The parents are taking action for their child and there are professionals involved, They are seeking recommended treatment. I think the parents are making the right decisions.

I'm wondering from some of the comments here whether the doctors involved might not think the same thing as you, but also pick up the same signals from the parents? Maybe they have a strong idea, but are also picking up on the denial factor. That could be why they are recommending treatments that are typical for the spectrum. Sometimes it takes a long time for parents to come to terms with it, because it takes going trough everything else first, then still being baffled.

They may just not be ready, and pushing it before they are ready won't work well. Do you know anyone else they know that has some insight on the spectrum? Sometimes hearing it from someone too close doesn't work as well as from someone a bit more removed from the situation.

One thing I know about me and my wife is that every since we discovered Asperger's, we've talked about so much we're beginning to pick up vibes from some around us making it fairly obvious they're sick of hearing about it. There's no doubt in my mind that some of them think we believe Asperger's is everywhere, and the problem behind everything. It's not really true, but I understand the reason they get that impression is because we talk about it so much. We have to though, because we deal with it so much (two sons diagnosed, another barely on the spectrum, me now being evaluated, and my wife also having suspected it in herself for quite a while now). It doesn't surprise me that our friends and some family members seem to think we're using it as an excuse for everything, but the only reason they think that is because they hear us talking about it, but avoid the subject themselves. If they would talk to us more about it, they would realize it isn't an excuse for anything for us. Just an explanation.

Just thinking if it's an issue for you, maybe you do talk about it a lot, and that may be what's going on with them. "Oh geez! There they go again with the Autism stuff. They think everyone has it!"

Just a thought.

Does the child have siblings? The reason I ask is that my son is an only child, and around 18 mos was when questions of autism started to arise. I was so confused because I had no other child to compare him to. My son had some autistic traits, but he made eye contact, and laughed and was cuddly and had words. Although I knew in my heart that something was probably wrong, some days I just didn't really think that it could be possible. I would waffle back and forth. Sometimes I just thought that it was because I was a first time mom, and I can tend to be a hypochondriac. Also, 2 is still very young, and many children that age have problematic behavior. So, even though I tried to grasp autism as a possibility, it just took a while for it to sink in. Maybe this is what is going on with these parents.

As other posters have stated, he is getting the services right now that are the most helpful for him. If I were you, I would just back off a while longer. Let them come to terms with this is their own time and way.

I am an Aunty to a 5yr old and 2yr old (boys). they are chalk and cheese (sorry - opposites!) the 5yr old has many traits and I put my relationship on the line with my sister 2yrs ago by discussing the possibility that he may have autism/aspergers ... she spoke to the pre-school the next day and one teacher said 'my son was just like him, he'll grow out of it' .... all my efforts the night before were washed away never to be discussed again (I should point out that my sis and I are v.close and see each other every day as we look after each others kids while we work either end of the week) I see my nephew every day and every day I see more evidence; unusual tone of voice, loud and unable to 'turn down the volume', unable to judge invading people's space, awkward in his movements (if he does go in for a cuddle with me it's because he's just seen one of the other children do it and he mimics ... and bless him gets it all wrong!), unable to accept other childrens ideas when playing, tell-tale (I realise this is due to the fact that he simply cannot tell a lie and if any of the other children break a rule he comes and informs an adult .... up to 30+ times a day!! !), he cannot stand certain textures i.e. fabrics, tags in his clothing, foods - he cannot eat a chocolate mousse because of the bubbles or a roll that has flour dusted on the bottom, he does not like water and until last year cried everytime he had a bath, he hates bubbles in the bath especially if they get near his face. He has a 'thing' about the remote control and has to take it every where with him - even to the toilet! he did have a faze of wearing gloves around the house. He runs in an unusual (MR BEAN) manner, he appears to be quite feminate in some of his mannerisms, he cannot blow his nose but will carry a tissue in his pocket to wipe, he gags when he gets upset and can make himself sick in emotional extremes, he works in numbers - today we sat in the car before sch and he saw a lady walk past "she has 1 girl with her today, normally she has 2" .... I've never noticed this lady before! he has a facination with dogs and counts them stating what colours they are............................................... I'm going mad! Is it me? am I trying to see something that isn't there to make up for the fact that I have a daughter with medial needs so if I've got one so should my sister!! ! someone tell me I'm right, tell me to chill and offer to speak to my sister for me (that last one was a joke!)

Oh, you are probably right. But ... if he isn't having any issues at school or at home, and if he's lucky enough to be in a little world where people just kind of take him as he is, then ... does it matter? If you are seeing it all cause friction between parents and son because they assume he should do things he really cannot, then it does matter. If issues are developing at school where teachers assume he just "does not want to apply himself" ... then it does matter. And so on. So that is my question - is the information needed at this point in time to make the child's life better? If yes, bring it up again. If not, let it ride until it does become an issue - which, in the best of circumstances, it never will.