Mother with Asperger's parenting Child with Asperger's
80Finally Some Answers
I've suspected my son, Xavier, had Asperger's Syndrome since I first learnt about it a few years ago. I read a book by Tony Attwood (PhD and Asperger expert) and some memoirs and recognised traits in him and even myself.
All of the difficulties in my life are now starting to make sense - why I struggled in employment despite being highly qualified, how my husband, Leo was my only ever 'real' boyfriend, how I struggled with anxiety and depression, why I get overwhelmed by sensory stimuli.
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Sensory Issues
I first learnt about Asperger's Syndrome through a food sensitivity forum I subscribed to. We were discussing our picky eater children and how my son gags on meat fat just like I do - something my family always joked about: that I could be a vet because I was so good at dissecting my meat!
The conversation enlightened me that picky eaters tend to have sensory issues - they are very sensitive to texture, flavour, smell, temperature of food, so reject it if it isn't just right.
I learned that sensory issues were frequently associated wtih Asperger's Syndrome - hyper or hypo-sensitive to pain and sensory stimuli.
Xavier and I always need scratchy tags cut off clothes. We chose clothing and footwear for comfort over fashion. I recalled Jamie screaming until age 4 years at the sound of hand-driers.
Confusion and Anxiety
I started reading about Asperger's and recognised myself.
I asked a psychologist that I had been seeing about my anxiety at resuming employment. He had diagnosed me with Avoidant Personality Disorder, which just made me feel more defective and confused than ever.
He said I probably did have Asperger's, but he didn't know a lot about it. He said I seem to be coping okay as an adult, being married and having a child, so would a diagnosis really make any difference?
I wasn't sure whether it was entirely accurate about coping well - my employment history has been very difficult - getting bullied and being underpaid and under-employed. I even tried some extremely unsuitable careers like teaching, and crashed and burned.
I'd battled anxiety and depression most of my adult life. I am just fortunate that my husband, Leo, stuck by me through all the difficult times.
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Labels Stick
Leo was intially reluctant to have Xavier diagnosed as labels stick. We knew about the stigma of labels from if I disclosed my history of depression to a potential employer - if I did, I never got the job. Also, he didn't want a label to be used as an excuse for not trying.
It soon became apparent that Xavier was going to get a label anyway - as the 'difficult child', 'strange child' or 'screaming child'.
Xavier was having major issues at school - he didn't have any friends and was a bully magnet. He had extreme reactions to school incidents - often reacting with screaming and rage episodes. He would frequently hide under a desk like frightened wild animal, ready to lash out if cornered.
Fortunately, with my scientific mind, I am good at observing and noticed a pattern. I had noticed that the bullying was setting Xavier off, but he was getting noticed, because he had the loud reaction - high-pitched screaming and even rage if they tried to move him. I also noticed that he was easily overwhelmed by sensory stimuli like sound and touch.
The bullying at school escalated to the point where he was being bullied by staff.
We started seeking a formal diagnosis, to at least get fair treatment from school.
For me the label is about understanding and trying to make better choices for the future - to disclose or not at my discretion. For Xavier, the label is essential to access him to intervention, to help him grow up into hopefully an independent adult.
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Getting Assessed
We ended up getting a professional assessment. We decided it would be in Xavier's best interests to pursue the label so the school would be forced to accommodating his needs. He'd started school enthusiastic about learning, but now in his third year, he hated school. He was realising he was different, didn't have friends, and got bullied constantly. Despite being bright, he was starting to struggle in class.
We sought a private asessment. At first the psychologist and psychiatrist suspected ADHD and a geeky, obsessive personality.
Xavier was on a special diet from when I had figured out his food sensitivities two years prior. Casein made him vomit and spacey and certain food chemicals made more moody, spacey or angry.
It wasn't until I put a few natural food chemicals back in our diets and they saw how more autistic we became, that they were convinced that Asperger's was the correct diagnosis, despite the many letters from school, video recordings and detailed case histories I had compiled. I had been recently fired from work for my Asperger traits.
Grieving and Accepting
Getting the diagnosis formally was a bit of a technicality, as it confirmed what we already knew. My son is now having further assessments through the school.
Even though, the official diagnosis made us grieve temporarily. I still fear for Xavier's future - will he get a grip on his temper? Will he get a job and be able to leave home and take care of himself? Will he suffer depression that he is predisposed to and will he survive it?
Emotional concerns. I don't want him growing up confused like I did. Whether we accept or reject the label, we both still have the Asperger's and it affects our daily lives.
Asperger's is an "invisible" disorder, because at first glance, we look "normal" and it's easy for others to judge the parents as being bad or useless parents when their child is being difficult.
But we are not living in denial and are going to help our boy be the best he can be. The psychologist said whatever helped me will most likely help my son.
My beautiful boy with Asperger's Syndrome
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thankyou
Thank you for sharing your story here. I'm sure it will help others become more aware of Aspergers and the signs to look for. A few years ago I had a child in my classroom with Aspergers. He was 3-4 yrs. old at the time. His mother was an ESE teacher at the local elementary school. We worked closely together as far as communication and she helped me understand his triggers. He was on a strict, healthy, organic foods diet. He had to have his own special treat when children brought in cupcakes for their birthday, etc.
I call him my little gift, as he taught me so much by working with him. We both had to learn how to communicate with each other, especially at times when he was reaching a difficult moment. He would walk by a table and shove things off of it and other kids would get upset. After some time and patience with him, he knew if he did this, he would have to pick it up by himself. We would take 'calm down' walks outside. We had 19 other kids in the classroom, sometimes it became too much for him, so I had instructed him to come to me or my assistant and ask for help if he started feeling overwhelmed. One of us would take him outside and take a short walk. One of his favorites was walking on the shadows of trees. We called it shadow walking. By the end of the year, his mother was so happy with his progress. He was so grown up. He seemed like he was on a different level cognitively and intellectually than the other children. The other kids recognized that there was something different about him, but I wouldn't allow labels on any child in the room. I tried to communicate that all kids are different and would concentrate on pointing out positive characteristics rather than the difficult challenges.
I applaud you for writing. I hope that your son will receive the support and education he deserves. As well as yourself. It must not always be easy to cope, but we are all different in some way. Best to both of you.
Thanks so much for your thoughtful comments. I plan to write further about what it's like for us. Yes, my wee lad is very advanced intellectually, but falls apart having major tantrums. I hope to help others understand what it can be like in this "different" world of ours, where we are so often misunderstood being honest.
I recall when I tried high school teaching (way too stressful on so many levels!) there was a boy in a senior class that would have been Asperger's (but I didn't know about it then). The class would laugh whenever he said anything in textbook fashion. I slammed the class for laughing at him - it mades me feel so angry when people get side-lined for being different
wow great article! Hits home for me, if you want to read my article on the many faces of ADHD, I talk about my son as well and the struggles we have gone through. the point being with ADHD is that it can have duel diagnosis with it and the main Symptom is the ADHD and then aspergers is one part of it. my son has tics and I believe mild Tourettes. Thank you for sharing that with me.
thanks, dawnM, I will read your hub and compare notes. I think my son's main issue is AS and a tic disorder with elements of ADHD, OCD and ODD (oppostional defiant disorder) - all made worse with certain food chemicals and anxiety
Thank You.... Your story has given me a glimps of hope. I am right in the middle of trying to cope with my son being in school, the school having problems and trying really hard to understand everything myself. I cry most days because I wish my son did not have to deal with all of this at a young age and wishing others would understand. Again thank you for your light of hope...
Carrie, I have written another hub about considering homeschooling (which I decided would be too stressful), but we are in the process of transitioning to a more understanding school. I also belong to some yahoo forums for support. Glad my hub gave you some hope
Thank you so much for sharing. We are in the middle of the diagnosis stage but the final assessments are just a matter of paper trail with so far all the boxes being ticked. Your son's story brought tears to my eyes as it almost exactly mirrors my son's. It is so helpful to hear your positivity and know that we are not alone. Tha
Glad my story helped you, alifar. Have written some other hubs about our experience too.
ahh thanks for this ..it was a great help to read ...i myself have just realised that i too have asperger syndrome and it sure helps me understand a lot of issues in my life ...its such a shame i feel i have had to suffer ialso have a son with aspergers too x
Glad you found it helpful Sallyann. I plan to write more at some stage. The toughest thing with my son is dealing with his tantrums and rigidity (I had shutdowns rather than meltdowns and I'm more flexible, so got thru school etc). So much makes sense now though on why I struggled in the workplace despite having qualifications and skills, and all my sensory issues and different way of seeing the world
Thankyou, your comments on the labelling thing are making me reconsider my decision not to test my almost 5yr old son, who displays many of teh traits of aspergers. It was mentioned to us by an irresponsible GP one day when we were getting his chest infection looked at, who suggested he may have it by his behaviour at the consult. At the time I was cross that she could suggest that from a 20 min consult (we were there for a check on me, his baby sister and him, so when he was not the focus he was able to show her his usual at home behaviours) and not give any advice at what to do about it. The more time goes on, the more things we see that are typical of aspergers and with school about to start for him, the labelling is a big concern for us. But you are right - a diagnosis can mean more help and a better life for him.
Also thanks for your discussion of sensuary issues - another thing I had overlooked as a potential as trait in our son. He will eat "fluffy potatoes" but not roast potatoes, chips or potato bake, and gags on heavily textured vegetables like broccolli and brussel sprouts, one time throwing up his entire meal after I told him he had to eat one bite of a brussel sprout to get icecream. He took a bite, hardly swallowed and out it all came. At the time we thought he did it on purpose... We don't ask him to eat those foods any more, and are happy to let him pick the peans out of their husks or give him peas in order to get green foods into him.
Joy, getting the label means we are getting the support our son needs. He is transitioning to a new school that is very experienced with AS. We have just started occupational therapy (no charge) to help with his fussy eating (because of sensory issues). The OT said kids with ASD can go off a food for life from a bad experience. I went through life undiagnosed - I felt defective as I knew I was an outsider. My son is aware that he has difficulty reading tone of voice etc. He also knows he is very intelligent.
I loved reading your hub. I have Autism and so does my son.
I look forward to reading more. Thank you. With all my heart.
MySonandI - glad you found my hubs - I've written half a dozen or so about our Asperger's. Look forward to reading about your journey too.
Great hub! Being an aspie myself, your work experiences mirrored mine. I got fired or quit from almost every job I had, so much so that I've been pursuing a writing career for 2 1/2 years now.
The big difference between your son & me is that there were no programs for aspie kids in the 70s outside of regular special ed; I was mainstreamed. Your kid is lucky that there are so many programs now.
Hope you write back & that we can talk again soon!
Dhart - I wrote a couple of hubs about my "failed" work experiences (despite being highly qualified). I seem to be going fine at my new job (where I work mostly by myself), and the people there seem okay.
I was a child of the 70s & 80s and teachers said to my parents that I was weird because selectively mute. Being female, I disguised a lot of my difficulties and made it through school
Brussels sprouts are very bitter, especially to those of us with heightend senaory perceptions; so, I soak them in salt water and rinse them first and they're great. I ALWAYS gagged on meat fat and found later that I have synethesia (sensory overlap), but it's lessening as I become older. I still gag on fat, though, so I don't eat it.
As an aside, our pastor's son had Dx Asperger's but is now symptom free.
Patty, I've never gotten over my adversion to the texture of fat/grisle etc. We are trying a pressure therapy thing involving body brushing (from occupational therapist). Is supposed to help regulate sensory perceptions. He's been calmer and more receptive to trying new things, and eating a little more; also I haven't noticed his tics lately (some of my family had the same tick, which grew out of).
A lot of symptoms can be caused by sensitivities by foods, which can be grown out of when more body mass is obtained.
Sounds like a lot of progress with your son, and I hope it gains even more momentum. Glad to know there's more and more hope. Interesting about the food sensitivities.
Yes, Patty. The OT was delighted with his progress - she's had a lot of kids respond to therapies for sensory issues - the techniques are so easy, it's not funny. Diet is the other thing that helps a lot - I hope to write about my findings soon.
In the few years, I have met many parents with Asperger's syndrome who have had a huge amount of success with diet. Some of your son's issues are intensified by his lack of understanding and age because all children have more difficulty than adults expressing their emotions and frustration.
I hope with the obvious love and support that you and your son have from each other and your husband that you will be able to work through these issues with much success.
Just curious, have you tried role playing out difficult social and work scenarios to see if that would help you cope better with social situations?
lake - yes, many with AS get affected terribly by foods.
Role plays are a good thing to do. I tend to model by giving an example of how to say something with appropriate tone of voice etc, if son does it with demanding tone of voice (I'm not the best model, however - I got told off at work for speaking more loudly when on phone!)
My 7 year old son is very advanced intellectually & verbally, but is behind with his social and emotional development - uneven development is a common scenario. A common statement is "how can someone that is so intelligent be so stupid?" The unspoken social codes need to be taught - I'm an adult with a university degree (A- average), and there's still social stuff that baffles me.
Social stories (routines with pictures) are recommended too, but I haven't tried those
Thank you for this. My seven year old was very recently diagnosed with AS and I myself was diagnosed at 23. A lot of what is in this article I can relate to, and I hope that by putting some of your strategies in place, it helps both me and my daughter have a better life.
Sassy - glad this was helpful. I have written a few hubs about AS. I intend to write one about what helped us with temper tantrums sometime in the near future
Do you have a suggestion on where to take a 22 year old to test for AS in the San Fernando outside Los Angeles? UCLA was suggested but their AS unit was shut down 3 years ago. Thanks for any suggestions.
Dave
dave - I live in Australia and some psychologists and psychiatrists may be able to diagnose (beware that psychiatrists are likely to push drugs).
Thank you for telling your story, it is so much like ours thats its eery. I havent been formally diagnosed and not sure its worth me spending the money to do so, but I am so much like my son in sensory areas, anxiety, depression, etc. Has a formal diagnosis been useful to you?
1aspieSon - my son was formally diagnosed so that he gets accommodation at school. He is very happy at his new school (the last school just branded him a trouble-maker and made his life difficult). I was informally diagnosed by the specialists that diagnosed him. For me, it's just been enlightening to understand all my struggles & differences over my life, and to help try figure out how to succeed in the workplace
I am having the same problems with getting me and my daughter diagnosed and have the same concerns for my childs future, i wish you all the luck for the future and i will carry your words for inspiration, thank you x
Caroline, I have a blog & website about our journey with Aspergers - http://www.aspergerschild.org/blog.html
Wow! So awesome to run into another mom/son team with AS like my son & I! Loving your posts. Keep writing, please!
If you're interested, I also have a blog. http://parentingwithaspergers.blogspot.com/
Thanks again for being out there and available to connect with. :)
I actually have a meeting at my son's school today and I have very seriously considered homeschooling him but he does have friends that he's very attached to. We've been through the bullying at school though and got marginal support from the teachers and administrators
warrioRR 24 months ago
End is useful thanks for the nice creation