Monday, May 17, 2010

So... Your Child has Aspergers - Part 1

I received an email from a concerned parent who was struggling with her child's new label and I wrote a reply. Afterwards, when I re-read the reply, I thought that it might be a good thing to share with other parents who are in the same situation. So, names and places changed to protect the innocent, plus a whole lot more detail added, here it is;

The Aspergers diagnosis is always frightening and overwhelming for parents but you are not alone. There are lots of parents out there in the same boat and lot of very successful "aspies" out there too.

Your child will not be "defined" by their label. It won't describe them fully and it won't necessarily limit what they can do. All people with aspergers show considerable variation from one trait to another and the mix is always unique. More importantly though, your child is, and always will be, an individual.

First Steps - Acceptance
The first thing that you need to do with the label is to accept it. It's only a word. Your child may struggle with various forms of acceptance for their entire life so it's important that their parents at least accept them for who they are.

Accepting the label does not mean accepting all of the conditions, criteria and symptoms of the Aspergers. Your child will always be different and no child fits every part of the diagnostic criteria. Your child will also change as they get older, some difficulties and traits will get better and some will get worse. The label you're accepting is truly only a shorthand way of referencing your child's condition. It's a way of quickly giving your child's teachers, helpers and supporters a head start in understanding your child and providing the right level of care.

You need to accept that your child has aspergers. Accept that it's not like a broken arm which can be fixed - your child has the condition for life. This word is going to be very important to your child's future and only by accepting it can you gain access to appropriate support services.

One of the most obvious signs that a parent hasn't fully accepted aspergers is their statement that their child has "mild aspergers". Don't try to downplay things. Accept your child and their label for what they are and the set about dealing with them.


Understanding the Impact of Aspergers
There is no such thing as "mild aspergers". Aspergers is a difference of structure. There is no "mild". It is either present or absent.

The mild vs severe concepts come into play when looking at how aspergers affects a child's ability to go about their daily lives. There are a lot of environmental and parental factors at play here.

Environmental factors have significant impact on the degree to which a child with aspergers is affected by their label. For example; A child who has aspergers and lives in a big city is probably much more likely to experience difficult social and sensory issues than one who lives on a farm.

Of course, while this is certainly true in the early years of life, it's also true to suggest that children who live in places with greater environmental stimuli will find themselves adjusting to the stimuli. They will eventually be more resistant to the challenges that a busy and social city presents than their country cousins.

I'm not suggesting that you change your lifestyle or move house. Simply that you be mindful of the amount of stimuli that your child receives from the environment and try to reduce it, particularly during moments of stress. You should not try to remove such stimuli entirely though as your child needs to experience it in order to grow and adjust to their surroundings.

There are parental factors to consider too with the most obvious ones being overprotective or being overly negative (violent or critical). I know of parents who don't allow their children out of the house and who don't allow them to attend school simply because they are trying to protect their child from other children. Home-schooling is a very effective tool but it needs to be done for the right reason. A child with aspergers cannot learn social skills if they aren't exposed to social situations outside of the family home.

Similarly, negative parenting techniques can be very damaging for the aspergers child. I'm not talking about beatings, though obviously such behaviour is harmful. I'm talking about day-to-day negativity. Statements like "oh, you're useless" or "you'll never make any friends if you keep doing that...". We all lose our cool with our children from time to time but we really have to watch what we say. Aspergers children generally have more a more fragile self image than neurotypical children.

There are lots of other parental issues though and lack of acceptance is certainly up there with the worst of them. Your child will always be your child, regardless of the label. If you deny your child the label, you will find that you're also denying your child access to early intervention services that they desperately need.


Parenting a Child with Aspergers
There are some things that your aspergers child will need from you more than neurotypical children. Your aspergers child needs your love and acceptance. They need to feel confident of your protection and that they can tell you about anything that is bothering them without fear of criticism. Sometimes it's hard to hold back on criticism when your child makes what seems to you to be an obvious wrong choice - unfortunately, you have to "hold your tongue" at these times.

While a lot of what your child says will be "garbage", you'll find that interspersed between discussions on the detailed mechanics of various star wars vehicles and other discussions of the special interest, your child will provide you with profound insights. You'll have to listen though and be ready to jump on seemingly throwaway lines to get the full conversation.

Lines like "my tablet tasted funny today" or "that boy wasn't a good friend" should never be ignored. Follow them up because these are clues that something out of the ordinary has happened.

Children with aspergers don't always read the social signs around them. They miss non-verbal cues and they don't always react in the proper way to people and events. You need to be part of their lives and to be included in conversations about their day in order to help them understand why things are wrong and how they are supposed to react. These are learning experiences and should be treated as such. The best teaching methods do not involve anger, shouting or punishment.

Your child needs you to become their advocate. Don't hide the fact that your child has got aspergers from professionals who need to know. Teachers and activities co-ordinators, scout leaders for instance, need to know these things. You'll be surprised how many professionals will book themselves on a course or pick up a book to learn more about your child. What they don't know, they can't accomodate for.

There's a lot more to advocacy though. I'm not suggesting that you need to start a blog or carry a placard but you do need to make sure that the right messages are being sent. There's a lot of misinformation out there about aspergers such as;

  • They don't have emotions
  • Sociopaths and Psychopaths often have aspergers
  • They only think of themselves
  • It can be cured by chelation, brain surgery, special dieting or proper parenting.
  • It's impossible for them to be in a relationship or get married
  • Aspies always have children with aspergers
  • They can't live independently
  • Only males get aspergers
  • Aspergers doesn't exist, it's just an excuse
  • They are all geniuses
  • They all do morally reprehensible things
  • They cannot lie
  • None of them can make eye contact
These are all myths.

There's a few good mythbusting articles out there including one from Boston.com and one from Health Mad.

A good advocate will protect their children from false information about their condition by ensuring that their teachers and supporters always have access to good sources.

Next Time
I've added a lot more to this article than I originally intended, so I've decided to split it into two. Next time I'll look at blame-laying, IEPs, miracle cures and self esteem.

29 comments:

Lisa said...

Thanks, Gavin, for a very thoughtful, comprehensive post.

Hartley said...

Thanks Gavin!

This is a great piece -- and I can't wait to read the next part. :)

Hartley
www.hartleysboys.com

outoutout said...

This is a fantastic, well-written response. Would you mind if I forward it to my AspergersAustism yahoo group (giving proper credit, of course)? Cheers.

Gavin Bollard said...

outout; I'm glad you liked it, I'm happy for you to forward whatever you want from the blog.

Foursons said...

Great post. I struggle the most with my son when he is stuck with a harmful idea in his head (ie- I caused us to lose the game, I'm the worst player on the team, everyone hates me) and he cannot be convinced otherwise. No matter how many different ways there are to explain the problem in a different light he refuses to accept it.

In Real Life said...

This is a really great post! Our family thinks along similar lines. Thank you for the list of myth-busters. I am looking forward to part 2!

Karen at CYB said...

Hi Gavin!
You are such a wonderful advocate both as a person with Aspergers and as a parent to a child on the spectrum.

I'm going to ask John to check out your most recent postings as well!

Thank you for all you do in giving of yourself to the autism community!

Karen

sushipie said...

Good article. I like that you point out that not every person will meet every requirement of a diagnosis. I prefer to use the term ASD (Autism Spectrum Disorder) as a label but part of the reason for that is that I have a hard time relating to the one subject obsession requirement for Aspergers. The same is true for my son. We have many autism traits but an obsession of one topic does not apply to us. There have been a few people who upon hearing about our Aspergers, immediately ask," What is your interest/obsession?" And when I don't have an answer I can just see on their face that they immediatly disregard our Aspergers. Like it's not real.

Leanne Neufeld said...

Thanks for the great post. I'm new to the blogging world and I'm not yet familiar with the etiquette, so I'll ask: can I use your post on my blog (giving you credit as the author obviously)?

Thank you for creating this blog! All the best to you and your family!

Stacey Smith said...

thank you for this post.

Is it true that not every condition or symptom of Asperger's need to be present to be diagnosed with Asperger's? When my son was tested, he met all the criteria except for senses sensitivity. I think the test said he had to have some issue with that to be considered Asperger's.

He's 18 now, and like you said, some symptoms are more pronounced now that he's older (I think more is expected of him now which makes these issues seem bigger.) His greatest struggle now is doing something new on his own. He literally doesn't know what to do unless I tell him step by step. It frustrates me and makes me sad.

He has so many gifts, though, and he's one of my most favorite people in the world!

Gavin Bollard said...

Hi Stacey,

If you have a look at the DSM IV diagnostic criteria for aspergers;

There's a copy here.

You'll find that it says

A.Qualitative impairment in social interaction, as manifested by at least two of the following:

It gives FOUR options but you only need to meet TWO.

AND

B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

It gives four Options but this time you only need to match ONE.

There's also a huge amount of information on the web, including quite a bit on my blog, which probably gives the impression that all aspies display certain characteristics. They dont.

Beyond the DSM, there's nothing else that is certain.

Cody s mom said...

I too struggled with the same thing. I looked for a doctor to dx my son not having aspergers or now autism. My first blog (Our family vs autism) was about accepting Cody for who he is. He is not broken. He's Cody first. It took four years to come to this conclusion but I made it. I'm open about Cody s condition, and I don't apologize if he's not what people want him to be.
Thanks Gavin. I will be following you. Nice to great advice and reassurance parents and friends need to hear.

Caitlin Wray said...

Loved this Gavin. Once your series is complete I'm going to add it to the list of resources I recommend for newly diagnosed families in my yahoo groups. This will help a lot of people :)

Caitlin
www.welcome-to-normal.com

Rachel Cohen-Rottenberg said...

Wonderful post, Gavin! Looking forward to the next installment.

spunkykitty said...

thanks gavin - i am sharing this post with my (aspie & NT) friends who have aspie children...

Sheryl said...

Thanks Gavin this is a great post and I agree with all those myths, it can be very frustrating when you come across those.
I hope you don't mind if I add a link to your blog on my website as it is very good and one that I would recommend to my readers.

Ann Memmott said...

Gavin, many thanks for this. Good to see positive and sensible information about us out there.
Your thoughts on "mild" are very refreshing. For so long people had entirely incorrect information about the 'mildness' of autism spectrum conditions. If there's a diagnosis, there is no 'mild'. There's only "well disguised for a while whilst people are looking, at huge effort to us".

Mind if I link your blog to my website? http://annmemmott.org.uk

Gavin Bollard said...

Ann,

Glad you like the blog.

Nobody needs to ask my permission to link me anywhere. I'm happy to be linked because it's really all about getting positive information out there.

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Kristin said...

I loved your post! My son is being evaluated tomorrow. He has already been diagnosed with aspergers and ADHD. My son is 8 and does not have one particular obsessive interest but obsesses on many differnt things. I have had many friends ask what his special interest is, when I tell them many different things they look at me like I am nuts! It hurts sometimes.

Kmarie said...

Question:
My son tested two points below qualifying for AS. They can't continue any more testing for two years until he is older. He scored extremely high for social anxiety, extremely low for adaptability, low on social skills...I read tony Attwoods book on AS and it really hit home and described him completely He also has high sensory overload. Is there really not such a thing as mild AS or borderline? I just feel like he finally makes sense and this explains so much but everyone I know is trying to make me not"label" my overly smart son. They say it is just that he is exceptionally bright which makes him intense.
Do you have any thoughts on borderline?

Gavin Bollard said...

Kmarie,

Because Aspergers is a "neurological difference", you either have it or you don't. There are no shades of grey.

The concept of "borderline aspergers" comes from the idea that people cope with their differences better or worse depending upon external factors.

For example; take two children who are essentially the same. Give one a whole lot of early intervention, make sure that their family is accepting of their differences, give them social practice and experience (eg: scouts and acting) and surround them with a group of understanding friends.

Give the other child exactly the opposite.

Neither has a worse condition than the other but they will cope at different levels to each other.

Of course, it's more than just environmental factors, the co-conditions come into play too. If one child has Anxiety+OCD and the other has ADHD+NVLD, the first child will have an automatic advantage over the second despite the fact that he too has conditions.

You didn't mention your son's age but since you did mention anxiety and social skills, it makes sense that these are the places you need to start with. It doesn't matter whether or not your child gets a formal label (except for funding purposes), the main thing is to ensure that he has appropriate early intervention to counter his issues.

If necessary, seek assistance from groups outside the school. Tutors and after-school activities will help in this regard.

Joanne said...

Great post Gavin! It can be very over whelming when you first receive your child's diagnosis, but you've provided some very sage advice.

I can't wait to read Part II!

Stephenie said...

We just received our 7 year old sons diagnosis yesterday. Thank you so much for posting this, it is incredible helpful to have so much encouragement.

Kay Walker said...

Great advice and tips. Parents need to know that maintaining level-headedness around their kids' diagnosis and "label" is the best policy. So many extremists get parents very upset or dissatisfied with others' best efforts - your blog post is such a steadying influence. I'll recommend it to any parents of Asperger's kids who cross my path!

NCTT said...

I am parent of an aspergers child. He is turning 9 next month. He was diagnosed at age 4. Up until about a year or so ago the behaviors never really presented an issue. Over the past 2 months I have committed myself to learning as much as humanly possible about what resources are availableban essential to his development. Im so angry at myself for thinking that I could count on the school district and dr's to guide me. However, I was dead wrong!!!! Nobody offered anything! Luckily, I have been on a mission due to finally realizing how much is available and the ONLY way my son is going to benefit is if I and I alone fight for him. I would like to balme everyone else but bottom line, its my job and responsibility as a parent of a child sith special needs to educate myself and fight fight fight. One of the hardest things is that even after 5yrs of having a diagnosis and services my sons father is still in denial. And because he is in denial obviously he doesnt have any knowledge of Aspergers nor implement any of the "therapies" or modifications that take place at school as well as hede at home. Right now my son spends 50% of his time with hia dad and I can see how the denial is impacting his ability to conquer his "issues" (I hate using that term, but im sure you all know what i mean). I have exhausted all financial resources to go for sole custody of my son based on the fact that dad is in denial and everything that goes along with it. I still want my son to spend time with hiss dad, although it must be limited. At least until he (if he ever) comes on board. I have been the sole advocate since my son was 2 and first noticed that something was different. Now I am facing 2 huge battles simultaneously. On top of working full time, caring for another child (2yrs), a husband and a home. It would be realy helpful to hear some feedback either from thoze who may share similar experiences and have some words of wisdome and or professional expertise on the effects thT dads denial has on our son. Needless to metion the amount of time and energy it requires from the single parent doing all of this alone

NCTT said...

I am parent of an aspergers child. He is turning 9 next month. He was diagnosed at age 4. Up until about a year or so ago the behaviors never really presented an issue. Over the past 2 months I have committed myself to learning as much as humanly possible about what resources are availableban essential to his development. Im so angry at myself for thinking that I could count on the school district and dr's to guide me. However, I was dead wrong!!!! Nobody offered anything! Luckily, I have been on a mission due to finally realizing how much is available and the ONLY way my son is going to benefit is if I and I alone fight for him. I would like to balme everyone else but bottom line, its my job and responsibility as a parent of a child sith special needs to educate myself and fight fight fight. One of the hardest things is that even after 5yrs of having a diagnosis and services my sons father is still in denial. And because he is in denial obviously he doesnt have any knowledge of Aspergers nor implement any of the "therapies" or modifications that take place at school as well as hede at home. Right now my son spends 50% of his time with hia dad and I can see how the denial is impacting his ability to conquer his "issues" (I hate using that term, but im sure you all know what i mean). I have exhausted all financial resources to go for sole custody of my son based on the fact that dad is in denial and everything that goes along with it. I still want my son to spend time with hiss dad, although it must be limited. At least until he (if he ever) comes on board. I have been the sole advocate since my son was 2 and first noticed that something was different. Now I am facing 2 huge battles simultaneously. On top of working full time, caring for another child (2yrs), a husband and a home. It would be realy helpful to hear some feedback either from thoze who may share similar experiences and have some words of wisdome and or professional expertise on the effects thT dads denial has on our son. Needless to metion the amount of time and energy it requires from the single parent doing all of this alone

Adam Westhorpe said...

I wad diagnosed at age 32 , only after my son was diagnosed and my wife and i agreed to a genetic study trying to corelate the passing of as through generations. I always knew. The doctors were shocked id slipped through the cracks" i keep my mouth shut and dont let anyone know i read atlas's like harry potter books" i cant small talk, its painful. It almost pysically hurts, but if you would like a lecture on henry the 5th and his life, im your man. I get on alright with my son cause i understand him , he aint never going to change, so leave him alone. Christmas is hard for the both if us we hate touching and the socailizing part. Why do people even talk to each other? . Picture your own life and mines basically the same, so why all the questions? . Just leave me the fuck alone to daydream about maps.
My wife and i make it work , she is my portal to the world and i actually really like her, even if i cant look her in the eye. Lastly , music is the only way i feel strong emotion, i could watch a child getting born and think that it was interesting but then bono could have me in tears . Like my wife says' were pretty funny dudes' .

Miguel Palacio said...

Thanks Gavin. As usual, good commentaries on your blog as well.

You mentioned: "Don't hide the fact that your child has got aspergers from professionals who need to know."

I would highlight that circumstances change as one gets older and once one is in the workplace, people in positions of authority are not necessarily your advocates. So, IMVHO, one should only disseminate this knowledge with much care, because it can be used against you. Only those who are very very trusted should know of one's condition, and even there, perhaps a better judge of character of who should be trusted would be someone who has proven to be tried and true with your trust because often times we are not the best judges of character at first glance.

As you might imagine, I was once tricked by a co-worker who gained my confidence and then that knowledge was used against me at a later time thereby impacting my career.

It's a touchy situation. Same as "reasonable accommodations" in the workplace can be extremely touchy and many may view it as preferential treatment. Especially if one can dissimulate their condition for the most part.

Hahaha on the mild firm of it. It's like being slightly pregnant. I also enjoy hearing people talking about having a mild version of something definitive, or a severe version of something mild. Especially enjoy people talking about having "borderline" Aspergers, not knowing that the term
"Borderline" is used for yet another condition with which they may not wish to be associated, especially given their penchant to attempt to minimize how they might be viewed. 😆

Regarding the term "disorder", I would prefer "condition", because though in some areas I may "not be all there", in other areas I may be more "there" than most people would aspire to be.

It kind of averages out, it seems. We just seem to have more accentuated peaks as well as valleys.