Saturday, March 5, 2011

What I wish I had known about Autism 4 years ago

Its 4 years since D-Day ( diagnosis day ). I recently did an interview for a Grad Student who was doing her disseration on Floortime and in the interview I talked about the early days

As I relived those early days, I remembered  all the worry and the anxiety

It made me think of all the things I wish someone had told me and so I decided to update the post I wrote a year ago on

What I wish I had known about Autism 4 years ago

What I wish I had known about Autism 4 years ago

These are largely my opinions formed through my own experience, discussion with my husband, professionals and my online friends

Will my child ever talk?

I believe most children will talk. The small percentage who don’t - will also - given sufficient time and resources will be able to communicate meaningfully

Do not think of talking as the holy grail

My friend Lillian says – “When your child with autism talks . he will be a child with Autism who talks”

Another friend Karen adds “So many parents, including me, hold talking as a holy grail, when in reality it's just another form of communication with an autistic child”

In Autism the entire game is about communication

Embrace PECS, Sign language( if you child does not have major fine motor issues ) written language ( if your child is hyperlexic ), augmentative device – whatever to communicate

Some people gave us some very bad advice that using PECS etc would slow down language

Luckily other people and professionals helped out and we started using PECS ( now no longer really need them )

All these tools will help with the talking .

To read more on my take on talking go here

Are children with ASD mentally handicapped or will they be Savants?

I think that many autistic children who are diagnosed with MR do so because of their problems with language.

They may not understand the questions being asked of them , they may not have the motivation to answer these questions and they may be distracted by their sensory reaction to the environment

Then there are problems with Processing Speed

And my personal opinion is that there is a lot of fear and anxiety in autistic children and this significantly slows things down. ( Temple Grandin says that the primary emotion in Autism is “fear”)

In terms of Savant skills - there are the exceptional savants of course .

But one of the criteria for diagnosis which is stereotyped and restricted interest potentially could allow for unusual focus in one area.

This ability to focus may be the source of excellence

For example, Malcolm Gladwell in “The Outlier” says that if you spend 10, 000 hours doing something you will become an expert in it

No wonder my son’s focus on numbers allows him to do things that you would not typically expect

But expecting unusual intelligence as a sort of compensation for having a disability is setting yourself up for a disappointment

“Why expect more from an Autistic child than you would from a typical child?” says Atul

Will my child be okay?

I used to ask neurologists etc about prognosis in the early days .

The implicit assumption is that someone has the answer.

But I don’t think anyone does

Donna Cooper says “Only god knows how many apples there are in a seed “

I think R will be okay in his own way. ie he will be a good person and I also hope he will be independent and self sufficient.

I think he will also be able to have loving relationships ( already does )

We have done best by keeping our eye on the big picture of what is important

Normal is not a goal we necessarily strive for

What causes Autism ?

I think the initial journey we spend a lot of time wondering /researching what caused Autism

We secretly wondering if there was anything that we did to cause it.

All mothers, as Vicki Forman says in "The Lovely Life”,believe that they can prevent anything bad from happening to their child if only they pay sufficient attention

You can start to wonder if its the coffee you drank while nursing, the Baby Einstein DVD's you pressed the replay button on, the hours you spend doing chores etc and not playing with your child etc

This is simply not true and to always gauge yourself against the bar of the perfect parent you should have been will drain away your joy

“No do overs folks” says Tanya

There are many roads into Autism and really no one knows the true cause of each child’s autism and the journey each child will take on this road

Is Autism a good thing or a bad thing?

There are many points of view on this.

I suspect it depends on the kind of Autism our child has, our general philosophy in life and the way we cope

Sometimes due to my general optimistic stance and my pride in R , I get asked the question "Would you take away R's Autism if you could"

This is the ultimate pointless question because the option is not on the table and never will be .

(Having said that if a fairy godmother granted me a wish – I would whisk away R's Apraxia and his Sensory issues without missing a heartbeat. Like most parents I simply want the best odds for my child)

What is the best way to help my child?

The most important thing while helping your child is to understand what your child really needs and what all the methods really offer in order to develop a custom home program

Jill Escher in her blog says it best “Custom home program. I hope this phrase enters into the vocabulary of all autism parents and professionals. Talk to most autism parents now and they'll tell you, for example, "We have an ABA program, some OT appointments, some speech appointments, a social skills group, and a few other things." It's usually quite disjointed, a bit directionless, extremely expensive, and very time consuming. If a parent can say, however, "I run a custom home program," that parent (after a certain amount of learning, to be sure) can cherry pick the tools (for example, concepts from the Son-Rise Program, Floortime, RDI, OT, PRT, whatever) most relevant and helpful for the child, focus on the most important goals, and intensify the hours to the extent desired.”

All the methods have their pros and cons and its largely the quality and quantity of intervention that will make a difference.

A lot of the specialists will say that their method is the best or that you cannot combine two methods ( - but I think you can. In our case ABA has flowed quite well with Floortime)

While we learned and continued to learn a lot of Autism from all the specialists - there is only two people who are specialists in R -

Mum and dad !

The sort of therapy naturally appeals to you will depend a lot on your instincts.

And on your child

If you are a parent that is more a player with the child you may find Floortime /Sonrise/Hanen /Play Project appealing
If you are more of a teaching-parent – you may want to first look at VB/ABA and RDI

Another really critical thing to look at is the resources available in your area –

Its tempting to want to do it all yourself – but I find that the hour in the evening that R has with his therapist is critical for me to sort things out , get dinner organized etc and then I can play with him after his therapist leaves .

Its also very important to not judge other parents

JdinTLH says "It is terrible thing that we assess each other based on which "camp" we fall into, DAN, ABA, vaccines, or none of the aforementioned. It limits our ability to support each other and it fosters a reflexive defensiveness about the choices and decisions we make for our kids.
There is no specific recipe that works for every child; if what you are doing works for your kid, bravo! Let's keep the judgmental opinions to ourselves and celebrate every bit of progress that our kids have, regardless of how they achieved that progress.

Will life always feel this difficult?

I truly believe the days after diagnosis are the worst and that things keep getting better.

Much better

For one, slowly your gain expertise and learn more about what to do

Meg says “I always call myself a "therapy mom" instead of a soccer mom. We know every agency in this area between the 2 kids, I have people in and out of my house 7 days a week--it's the norm here. People call me to find out the best therapy for XYZ problem (even not ASD related)”

Second we learn better on what to feel

Lillian adds “Coping mechanisms include (but are not limited to) developing hobbies and other outlets , rethinking autism ("it's not a disease, it is actually quite normal because a guy with super-high functioning Asperger said so"), experimenting with pharmaceuticals (I think I might have anxiety , so I'm on Lexapro now), getting more philosophical ("I saw a kid with cancer, we are truly blessed because it can be so much worse") , yelling at your spouse ("you have no idea what IEP even stands for"), shifting blame ("must have been the mercury"), blog writing etc."

In my family, we have found It very important to write our own recipe for happiness.

We spend no time thinking about lives that others have or the life we could have had without autism

We also find it critical to remember that it’s R’s life, not ours.

And his version of happiness may be different than ours

Atul commenting on Parenthood ( the scene where the dad is lamenting that his Aspie son Max could not have the happy moment ) says “ Why does Max’s happy moments have to be the ones his dads thinks are happy ? Why can’t his father enjoy happy moments that Max defines and creates – like playing Bug world?.. Why do they always set themselves up to fail by creating these situations where they want a typical-child-moment and then mourn when they cannot?”

My friend L says “The basic root of my problem… I keep wanting my very autistic kid to behave like a non-autistic kid, and guess what- he sucks at it. And guess what? I keep getting upset over it and write endless blogs just stating the obvious. I swear, sometimes you get sucked up in your own little vicious cycle of emotional wheel-spinning, and all you need is someone to wake you up.

Do the specialists know best ?

Depends upon the expert- - We have found WONDERFUL experts and some not so wonderful ones

Leaving it all to the therapists has dangers – nobody knows your child as well as you do

Heather says “He is an alternative child .. so he needs an alternative approach

My friend Debbie says “I wish I knew that autism presented in many different flavors. That some kids did better with models/approaches other than ABA. “

Molly adds “With a diagnosis of autism, its as if you've been given the job of CEO, CFO and COO of your child. You are in charge of a new kind of corporation within your family. You get to choose what vendors to work with, you get to choose what money to spend on those vendors, you choose how your child's activities will be structured. However, just like the executives of a corporation, all of your decisions need to be based on the facts on the ground, what's available and what's called for, in corporate speak, those Market Trends, but more importantly, you need to base your long and short term goals on the output and productivity of your child, what he's capable of today, and how you'd like to see him in the future, with the course corrections and the reorganizations that are so typical of big businesses. If you are too static and too staid in your course, your child will become disgruntled. If you are dynamic and ahead of the curve, you and your child with thrive”

Nidhi adds  "Limit the advice you take from therapists/experts to their field of expertise. Don't listen to your OT regarding communication strategies or your Psych regarding speech goals and so on.
This is rather obvious but it has been very helpful to me. I would get swayed by anything anybody said, at first. Obviously, there are some therapists who are exceptions. But for the most part, it's a good rule of thumb.
An OT giving advice in pretend play, not so good. Have your psych/play threrapist do that. OT giving advice on sensory diet, great"

Will my child recover ?

I think one critical thing to do it to change your mindset from Recovery to Progress

I spend a whole lot of time looking for the magic bullet – read every “recovery” book

Went to all the experts

There are many books which describe the despair of the diagnosis – then the parent who searches out a method – Applies the method, sacrificing all, to the recovery of their child

And then their child recovers

However I find there are many parents who also worked heroically whose child did not recover.

These parents are just as heroic- I know some heroes personally.

Its just that their stories are unwritten

Plus while these stories are inspiring – there is another implication which can be very damaging to your happiness.

This implication is that if your child did not recover – clearly you did not do a good enough job - this is a TERRIBLE thought to live with and is simply not true

DH and I tend to focus simply on Progress

One of my friends says that the definition of success is that you are battling a different battle this year than what you were battling last year

Very true

My good friend Lillian’s advice is “Celebrate progress -Yes, it is progress, quit being so picky about it !!!”

Don’t think your child not doing what you wanted for them is a bad thing necessarily

 Kat says “The biggest thing I have learned is that everything I held dear in my imagination about what I hoped for my child was right only for me. My child is not me and has a completely different life trajectory than I will.”

PACE yourself

And be kind to yourself

Guilt , grief and anger are very bad companions on this journey

A positive outlook is CRITICAL for you and for your child and your spouse ( and your other children )

P says “Next came the I'm going to do everything I can and research all the treatments and try everything. Then after 3 years of working my ass off he'll be "fine" or "cured" just like all the books say. Ha. The only thing I accomplished is burning myself out. I still haven't recovered. When they say it's a marathon and to pace yourself, they're not kidding!”

Another dear friend Ellen  says "Don't let all the "warrior mom" stuff go to your head. Yeah, you will fight hard for your child, but lots of moms do that, not just those in the autism community. I learned how to be a fighter from my own mother, who had no special needs children."

What does my child REALLY have ? Is it Autism or something else?

Autism is a HUGE umbrella .

Don’t be scared of the word

We found that its best to simply focus on what R needs- not what he has .

This will change over time – the challenges we needed to conquer in the beginning were for R to simply have some receptive language – then we discovered apraxia. Then SPD.

Christine and Tanya say “Don't get caught up in the name - PDD, PDD-NOS, Mild, Moderate, Severe, High Functioning. It doesn't really matter. You have to look at your child and their needs and goals. The name doesn't really make a difference”

My friend P says “one day there will be 32 diagnoses in place of what is now called Autism

What will happen after age 5 ?

One of the worst myths about Autism is that we need to cram in all development before the age of 5

This is simply not true

For R almost all developmental leaps have come after the “expiry date” of all development

The thing about Autistic people is that they keep learning all their life” says Temple Grandin

There was this story about an autistic child who grew up and beat his mum to death? Is that my future?

While there may be some autistic children who are violent and a danger to your safety - I have never met one!

The autistic children and adults I know would not hurt a fly.

Its very important to not read horror stories and imagine that to be your future.

If this is indeed in the future - worrying about it will only drain away your present of joy - as my friend Mysh says .

If indeed this were to happen of course we will need to put safety first - but there is no necessity to anticipate this.

Another thing to remember is that aggression in toddlers and children does not equal aggression as adults

How to deal with the things people say

Ellen says “Your child's autism can be an opportunity for strangers and loved ones to be incredibly insensitive. Try to see the difference between the people who are invincibly ignorant and the people who mean well but just don't get it. The former are incorrigible but the latter can be taught. Be patient and understanding, just like you want people to be patient and understanding with your child. “

People usually mean well even when they say insensitive things .

Lillian describes some insensitive comments

“Here is my top things of what not to say …1.It all happens for a reason , God gives special kids to special moms etc

(because the chance of finding a new ASD mom who is truly cosmically inclined at that moment is low).

2. It is still the same wonderful child (duh !).

3. It could be so much worse (sure....feeling better already)

4. He is a very special kid (um....yeah, I think we already established that)”

When you face judgment remember that only you walk in your shoes

Kat says about the writing in books like the Tiger Mom book

This woman has no idea what a luxury it is for her to be able to remain stuck in her own narcissistic viewpoints and do things her way, and not have to face any life challenges that might disrupt that path and challenge every damn bit of her parenting dogma.”

Don’t over pathologize

Your child is still a child

My friend Debbie says “I wish I knew from the start that he was there, that he was in there. He was present, full of emotion, and intelligent, even if he was puzzling to me.

I wish the time period immediately post-diagnosis where I stopped seeing him as a child and started seeing him as autism. …. I wish I had never done that”

A note on DAN

We do some DAN –we don’t know how much of a difference it made but we wanted to make sure we gave R the best shot so we went to a DAN doctor who is also a regular MD

Be careful of who you choose

A gem of a quote from Lillian “No, DAN! doctors are not immunologists, toxicologists, pediatricians, microbiologists bundled into one. For the most part they are family practitioners with a 2-day course who quit taking insurance. “

Is my family’s life ruined ?

It really does not have to be .

My husband and I have found ourselves happier after autism than before autism

Molly says “I just think it's amazing how autism changes lives, how many people redirect their energy once they've seen the light.”

Please don’t misunderstand. I am NOT saying Autism is a good thing to happen to you .

All I am saying is that happiness and joy are very possible in life after autism –

I have found my life more enriched in many ways after autism.

In how I see things

Like Mysh says “ Having a child with Autism has totally changed my perspective on things. I appreciate so much more these days as I think we all do”

In my own personal growth

This mom – Kyra - writes “I’m better for my experience with our version, not just for the obvious fact of my son's precious presence in my life but for what I’ve learned over the last few years, specifically about narrow places within myself that needed widening.”

Another gem from Lillian“-Shit happens. It could be so much worse.”

Don’t forget you

I cannot over emphasize the importance of self reflection and self-compassion on this journey

At the center of all you plan to do, is who you are

Never forget that

Observe for signs of PTSD - mom-nos wrote an excellent article here last month

Reflect on the things that make you uncomfortable and reflect whether it’s to do with your child

Or to do with you

Annie says “ All of these years I have been so defensive of my son and I have assumed that everyone didn't like or accept him. I am learning now that that was just my way of not only protecting him , but also protecting myself”

Karen says “There is no way that a parent can mentor her child socially if she herself is consumed in fear”

She adds “Your life is what you choose to focus on. How I perceive my experiences and what I choose to think about and view are completely up to me - every minute, every second. What we focus on is what will grow.

These, therefore are the gifts in our unique journey

The first gift is the shift in focus. An opportunity to press the reset button on life. Shifting your focus to what really matters.

The second gift is enjoying each small step and taking nothing for granting

The third is enjoying our children’s childhood in slow motion

Finally the fourth gift is the lovely people we meet.

And so this is what I would tell the worried K of four years ago

It may not be what you thought it would be.

It may not be easy and it may not be fair

But it can still be very very good

And it will 


Trish said...

So full of great advice and encouragement - thanks for taking the time to write all of this down. I love the idea of describing our approach as a "custom home program" especially as it changes over time in response to our son's needs and our family's needs.

A wise parent said to me once, "It's a marathon, not a sprint." So true - at times you think you can find the perfect answer for it all if you just spend enough time researching and reading, but that's not true for anything in life.

BabyWeightMyFatAss said...

Thank you for your post, especially the part about the PTSD. Never even thought of it but it reminded me of a few things.

Dani G said...

K, this is one of the best posts I've EVER read. I swear. Amazing.

Big Daddy Autism said...

Great post.

Brenda Rothman (Mama Be Good) said...

What a lovely, lovely post.

autismand said...

"...change your mindset from Recovery to Progress"
In these few words you have the recipe for peace of mind. This is a post that should be given to every parent of a newly diagnosed child.

Allison said...

Your original post was one of the first I read after my son was diagnosed, and I found it incredibly comforting. "Don't over-pathologize - your child is still a child." Amen, and thanks for reminding me. I liked reading the addition of others' comments, too.

shirin said...

Dear k
Love your post very much..i too use a home custom program which has done good for my faheem...

Mr. Daddy said...

Thanks K,
it is always a blessing to read your thoughts.

Alysia said...

fantastic, meaningful, important post. Especially the part about communication. I need to share it.

Rachel said...

"We have done best by keeping our eye on the big picture of what is important "

Profound for any parent!

And the last part... about it might not be easy and it might not be fair... I think that traps a lot of us.

We expect fairness, expect a certain degree of ease. And it can be easy to forget that there is a measure of "unfairness" in each person's life. I have to get out of that self-defeating cycle of Comparing!

Thank you K - so much of what you say I can apply to my own mothering.

(For truly, you mother out of your heart, not out of a book or your vast intelligence! Just look at R and his relationship with you two!)

Þorgerður said...

That is a good post. :) I enjoy reading it again.

Lynn said...

I will be pointing others to this post indefinitely...there is so much good here. Pace yourself is a big one...I really fell prey to the whole "cram it in before they're 5" mentality. Love all of the quotes...what a big job you took on, but so worth it!

Casdok said...

Super post for early day parents :)

Amanda Broadfoot said...

What a WONDERFUL, inspiring, informative post!! You said it all so well, my friend. I have recommended this on my site (see the sidebar at, because I think all parents, especially those new to an ASD diagnosis, will find hope in your words. The kind of almost-concrete hope that is based on truth and experience. Thank you from the bottom of my heart :-)

simonne said...

I also have a blog to discuss ideas and feeling regarding autism and I found this to be one of the best postings I've read. So glad to read about others experiences.

Lisa said...

Great informative post K.

Anonymous said...

Thank you so much!!!These are the things i wish i had known too!!!

sharon Morris said...

Great post. I really appreciate it as a newby to the ASD world. Thanks.

Anonymous said...

Brilliant post. So filled with wisdom and wonderful advice for parents. Truly, these are the words I would have wanted myself to have in hand years ago when we started on this road. You are a gem. R is so blessed.

Anonymous said...

so good. so true. the gifts you write about - the shift in focus, celebrating each step, enjoying their childhood in slow motion, meeting amazing, wonderful people - i'm so grateful for these gifts.

thank you.

kathleen said...

"We focus on progress" yes!!! This was really a wonderful piece..I hope a lot more parents read it. :)

danette said...

Beautiful well said, as always. There is so much wisdom in this post, definitely a great resource for parents and other family members.

Thanks for taking the time to write this!

Unknown said...

Thanks for giving me comfort in my hour of darkness. You have offered me hope and a positive outlook. I read it often to help me thus helping my family.

Thank you again and please continue posting.

A new ASD mum.

Unknown said...

Thanks for giving me comfort in my hour of darkness. You have offered me hope and a positive outlook. I read it often to help me thus helping my family.

Thank you again and please continue posting.

A new ASD mum.

Secret Sunshine said...

Thank you for this. The language anxiety is exactly what I am going through right now, and I have to put things in perspective. I don't know why, but I just want to quickly catch him up to age appropriate with the language skills, and now that he's falling further behind, I'm so frustrated. I'm going to take the opportunity to be happy that I am taking action by exploring new speech therapy options and also stay focussed on the progress he HAS made. Today he said "Hi!" to me unprompted. It's a good day.

pc said...

thank you for such a great post.
I really need these advices, still in nearly stage of denial, questioning, confusion.

Thank you for bring me back to course.

Especially the quote on I wish I do not look at my child as autism child.. it really strikes me hard.

Thank you!

Unknown said...

I really needed to read this today, thanks a lot for the post.

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