With the holidays nearly here, I'm thinking ahead about some of the issues that may come up - and about extended family reactions to our kids with autism. Why doesn't he want the things that other boys his age ALL want? Why won't she even TASTE this delicious pumpkin pie? Why won't he play the games we play, sing the songs we sing, and so forth?
Or, in our son's case (when he was younger) - why is he hiding in the bedroom when we're all out here talking as loud as we possibly can?
Often, we parents put all the pressure on ourselves to prepare our children with autism to behave appropriately. And of course preparation is always a good idea. Using photos, social stories, videos, and even scripted rehearsals (thanks for the present, Grandma!) can be a great way to improve the holiday experience.
But no matter how hard we work, there will be glitches. Grandparents expect and long for those big hugs and happy smiles. Aunts and uncles want recognition for their special recipes or gifts. When kids with autism don't respond positively, family can actually take offense.
But there are ways for extended family to prepare themselves and their homes so that your visit will be more positive. A few possibilities:
- Ask ahead of time what a child with autism might enjoy, and have it ready.
- Prepare a quiet room with a TV and VCR, so the child with autism can retreat if necessary.
- Ask about the child's preferred gifts, and give them - even if they seem age inappropriate.
What other strategies do you recommend to extended family preparing to welcome an autistic child (or adult) with autism? What works? What doesn't? Share your thoughts!
I am an adult professional endowed with Asperger’s.
When I first realized I probably had Asperger’s (later confirmed) I felt it was a blessing, for I could finally understand why I was different, and two positive things could occur:
A. I could alter my behavior by analyzing anecdotes of stereotypical Asperger’s behavior, and avoid those behaviors.
B. Family members could understand how I and my sons were different, try to comprehend those differences, and be more tolerant.
While both A and B have effected significant improvements in relationships, there is a big downside. I am hardly stupid (I engineer multi-million dollar projects and speak five languages), yet I cannot help but notice that family members now often speak to me condescendingly, if they speak to me at all. It is very disheartening to watch my daughter and wife speak incessantly when they are together, yet I can drive my daughter for three hours back to school and not be able to successfully initiate a single conversation.
I’ve learned to patiently listen to other people’s interests and conversations, yet it seems that others have done the opposite; decided that what I might want to say is an obsession or something, and therefore not worth listening to. While it is difficult for me to tolerate the busy room with three conversations going on, I still crave having a conversation with someone from time to time, and the isolation is starting to get to me.
Please don’t just tune us Aspies out.
I had a giggle at this article remembering my Aspie son opening a pair of socks from his grandmother one year and saying “Socks? Who seriously wants socks for Christmas?” Granted, they were novelty socks, but I was conflicted in asking him to apologise because he had a point.
Bill, I am too an adult Aspie. I also find it to be a very lonely existence. When you’ve had to consciously teach yourself correct behaviours and of what is expected in a conversation, it makes it so much more annoying when people don’t follow the correct format.
I crave solitude, or at very least isolation from those other than my immediate family. But I also go through phases where I yearn to be “normal” and have indepth conversations and friends who “get it”. Occasionally I try, but it always ends in tears.
I’m sad to say, but I’ve given up on trying to help people “understand” autism. I don’t think you can really ever understand it unless you live with it every day.
Our strategy is to get my mother in law and all those with issues heavily “liquored up” before the Christmas bash begins
! Unfortunately, there are those who know better who still become offended when our daughter retreats to her room, doesn’t say thank you without prompting (she was non-verbal until a year ago), shows zero interest in her presents followed by a tantrum when she becomes fixated on someone else’s presents. But the fact remains that despite other’s impatience she has made wonderful progress and gone far beyond her comfort zone in the past few years, so if they can’t bend a little to meet her than they can stay home and/or drink their faces off if that’s what they need! I think it’s important to do what we can to give our children the tools they need to navigate this crazy world but we can’t fix the ignorant who don’t want to be fixed and I’m not going to terrorize my child for their delusion.
hi im brent well this is a call for help im autistic im to sceared to tell people as soon as you say something like that your automatily put into the retared box i live in new zealand and would aprecate it if some one could give me deatails of how and where to get help to deal with it it would be very much apreciated my e mail is gtov6@hotmail.com
or if anyone would like to talk about it that would be great to as at the moment it seems no one else can understand what its like thank you
I had to laugh too, Cate, the sock story is so typical. I used to be so embarrassed when ours would open a gift and dryly say, “I didn’t want this”, and then ya say, “say thank you”, and they say, “why, I didn’t want it”. He has a list in his head of expected gifts, and I have a script I’m trying to put in his head…say nothing but “thank you”.
I will say he’s artistic, I asked him to do a pastel of something for the holidays, I usually put his art up , not on the fridge, but on the dining room wall. So yep this year I got the Titanic sinking, including iceberg and a killer whale. ( coulda’ been worse, could have had sharks circling)
On another note, I know some don’t approve of this, but we have a mall offering “sensitive santa” before regular hours , with soft music and lights down with an open invitation to autistic children.
I am having trouble helping my grown son who has aspergers. I have tried everything that I have been advised and he fights me tooth and nail. He seems to be going backwards and wanting me to do everything for him. As I am pulling away and trying to involve him in a program that will help him more than I can, he is sabotaging it. I seem to be doing him more harm than good and need the help from the outside and don’t know how to do this without him sabotaging it. I don’t know what to do. I am open for suggestions. I have tried everything that has been suggested and am open to new suggestions. He wants to stay up all night playing games, sleep all day, and stay within in his comfort zone. But he is 29 year old and needs to learn to live on his own. He use to know how but has gotten himself in some bad financial trouble. I am very scared for him and need some guidance so I don’t enable him yet am able to still be supportive. How do you do that??? He has been suicidal before. He also has pschitotypol.
Those games are very addicting, I know some pretty “normal” people in his age group that are living exactly the way you describe, game all night..sleep all day.I would think, for a socially isolated individual , gaming may provide a level of interaction that could fill a void and be a good thing. For others, especially young children I believe it promotes isolation, which is a bad thing, kind of good medicine for some bad for others. What are the rewards for independence? Are they as satisfying as having a group of online peers “virtual high five you” for your performance? It’s hard to beat that!
I don’t like that word, “enable”, what does that do but throw the onus on you, that IMO is crap. You verbalize options, you write your child a note, you provide medical advice, from there what are you suppose to do? Are you to make him angry, force him onto the streets, sink or swim? I don’t know, but I do know there is time to stop blaming the mother, we can’t fix everything.
btw, If I sounded a bit angry with the “sink or swim”, I have a sister in law that did that with her asperger’s son, he’s on his own, living in a dangerous ghetto, has been mugged more than once with bodily harm, he hates her, they have no relationship at all. Is he swimming?
On a lighter note, I don’t believe in talking to mine like he’s “nutty”, I’m pretty straightforward, and we laugh, I get to be him in a role playing thing we do, tonight we “got it down”. I asked him after, “what do you say when you get a present you don’t want or like, he said “thanks”, I said, and….he said, “then you lie and say, I really like this”. I said, yep, you lie. Funny thing, he’s not a very good liar, it doesn’t come naturally, and I feel ambivalent about this as a choice, but , I’m not perfect and really we all do it at times to protect others feelings. Now if I could say how do I look and get something other than , a little fat, or a little stupid, I will have gotten the message across.
Some thoughts I’ve shared with readers over the past holiday seasons based on many years of experience
Ten years ago, a parent of a fifth grader diagnosed with autism commented that holiday visits were particularly difficult for her family. “Although none of the aunts and uncles and grandparents have said anything critical, my husband and I both feel pressure to make everything perfect so our daughter doesn’t act strange or have a meltdown.” Over the years, the family has learned to relax and enjoy holiday visits with their extended family. Their youngster still struggles with significant behavior issues when away from the security and comfort of her own home and daily routine, but her family has learned that everything runs smoother if they approach the holidays from a different perspective. Some tips from their experiences and those of many other families over the years:
1.EXPECTATIONS. Don’t expect perfection. It is unfair to your youngster and to the family to expect an idealistic, perfect time together.. You can certainly take steps to help optimize the holiday visit, but it is not fair to your daughter or to your family members to expect anyone to be perfect. She may have some tense moments and your family members may not always say the right things, but you need to keep in mind that all families have warts and bumps. Family gatherings are about friendship and connections and traditions, not about perfect kids.
2. ASSUMPTIONS. Don’t make assumptions. Many of us make inaccurate assumptions about what others are thinking. When it comes to the reaction of other people to individuals with special needs, we tend to be overly sensitive about their words and facial expressions. Sometimes we assume that Aunt Tilly’s silence is criticism, but it may be that she is just trying to figure out an appropriate way to ask you to help her understand more about autism.
3. RELAX AND ENJOY. This is often easier said than done, but you can really optimize family gatherings for yourself, for your child, and for your extended family if you just chill out and enjoy the day. Look for the positive and ignore the negative, both in your youngster and in the extended family.
4. SCHEDULES. As much as possible, maintain your regular family routine. Of course you want to allow time for some special activities and sightseeing, but try to keep meals, baths, and bedtime on their regular schedule. Don’t forget to talk to your friend with autism about upcoming special activities. Don’t just get in the car and head out. Take some time to tell the person what to expect for that day or for the weekend.
5. BEDTIME ROUTINE. If at all possible, let your youngster with autism sleep in their own bed. If you are away from home, encourage them to take their own personal pillow and blanket to allow them to relax with familiar smells and textures at night. It may also help your friend head for bed more readily if you avoid exciting, stimulating activity in the evenings and keep the bedtime routine as usual.
6. BEHAVIORS. If extended family members have not gathered recently, they may not be familiar with an individual’s autism. It can be disconcerting for grandparents, for example, to unexpectedly find out that their granddaughter has quit speaking or has begun having explosive outbursts. You might consider sending them an e-mail or letter briefly discussing the nature of autism and describing some of the currents challenges as well as some of the strengths and special interests that have emerged lately. Don’t forget to respect privacy. Avoid talking out loud in a group setting at family gathering about your child’s autism or about problems you are encountering.
7. TIMING. Extended family visits are difficult for everyone (just ask my husband!) Remember that you don’t need to stick it out from beginning to end. Plan to avoid difficult issues. For example, if your child particularly struggles with bedtime, show up before lunch, enjoy spending a leisure afternoon with everyone, then mosey on out the door after supper without making a big scene.
A holiday visit requires that you remain vigilant to help your family member with autism stay on track. A low-key approach to the whole situation works best. It isn’t necessary to make a big deal over challenging behaviors or issues that arise. Don’t expect perfection. Take care of all problems swiftly and quietly, then relax and enjoy your visit. Over time, these family visits will become more familiar to your son, and the family traditions will become an important part of the fabric of his life.
TIP FOR THE DAY: Each family must make its own decision about participating in holiday gatherings with their extended family, but I encourage you to give it a try, even if you just visit for a few hours. Taking time to strengthen family ties will add to the quality of life of your youngster with autism over the years.
Dear Cathy;
Although I think your suggestions are generally good, I believe they are based on a few assumptions of your own. You’re assuming that the extended family really does want to build a relationship with the child with autism, that the parents are poorly planned and have a faulty perspective going into these events. This is really not the case in all families.
My husband and I have no expectations, make no assumptions (some family members have flat out told us that they will never like or love our “retarded” daughter… kind of hard to misinterpret that one), we schedule and plan to the point where it has become a finely turned machine but our child is very severe and it’s still too much work for us to “relax and enjoy” the day. We have tried and we continue to try, which is why it stings when people say things like “taking the time to strengthen family ties will add to the quality of life of your youngster with autism over the years” because in our family that’s a lie. Comments like that make parents who are putting in 200% but getting nowhere feel stupid and inadequate. And it further adds to the sadness and insecurity that comes with knowing that family members who once claimed to love you, have a love that’s so conditional.
Again, good advice in general but not a universal formula.
Dear Liz,
Conditional love and critical remarks from family members are, indeed, maddening and heartbreaking. Please know that I was not intending to infer that these ideas would work in all situations, but was, rather, sharing some tips that have worked for some families. Autism and its impact on lives is so diverse. Wouldn’t it be great if we did have some pat answers and universal formulas guaranteed to work most of the time? Or even SOME of the time!
I agree with you that relatives sometimes shower us with uninvited advice about parenting, or they may criticize us or our child unmercifully. Even when their advice is well-intentioned and offered in a non-judgmental spirit, it can still be hurtful. And some folks are, indeed, unfairly judgmental or just plain rude. It seems to me that we really have three options when that happens: (1) grow thick skin so we can ignore the hurtful remarks and avoid letting rude comments or judgmental opinions ruin the day, (2) cut the criticism short by taking a deep breath and calmly saying something like, “It would be most helpful to me if you would avoid talking about my child and avoid criticizing me,” before changing the topic of conversation and ignoring other critical remarks, or (3) leave gracefully. Some friends have found it necessary, just as you have, to avoid family gatherings altogether in order to steer clear of people who are rude and critical.
One of my friends invites two other families over for informal holiday gatherings. Their “kids,” all with significant challenges, are now young adults. All are able to enjoy the afternoon since the families have all had similar experiences.
Best wishes to you and your family, Liz.
Here’s my holiday dilemma: the neverending series of extended family gatherings. Last year was a disaster, with 4 unstructured parties with over 10 people in 4 days, and we ended up with sensory overload and overexcitement leading to hyperactivity, rough play, and the multiple kids crying, where I had to physically drag my 4 year old son into a corner to calm down about once an hour by the end of this mess. Talk about a deck stacked against him!
So by mid-January, when tantruming had returned to a near normal level after this ordeal, my husband and my mother in law both agreed in principle to “never again” ask so much of him, to reduce holiday stress and events.
Now I’m hearing there’s a party planned for each of the three days of our trip, and I’m getting flak for saying we will come to ONE party, and the others we’ll consider dropping by for if my son happens to be in a good frame of mind. And if I try to schedule one-on-one time with other family members, small gatherings which are structured and not stressful, I get a “why are you planning another party and excluding me and not coming to my party” whine. She just doesn’t get it.
Commisseration and advice welcomed.