Sunday, August 06, 2006

Advice for Parents with Autistic Children

I am regularly asked for advice by parents with children on the autistic spectrum. Because autism is such a profoundly complex condition, and very personal in how it affects each individual, it is not possible to offer advice that will be equally insightful or helpful to everyone. From my own experience, I suggest the following:

Ensure good basic hygiene skills, particularly tooth-brushing (which I had considerable problems with over many years into adolescence) and which I've subsequently read is a common problem because of the sound or texture or both of the brushing action.

Help teach your child core skills to function in society: how to dress themselves, tell left from right (perhaps use 'L' and 'R' labels as my parents did with me), maintain eye contact, understand and respect the concept of 'personal space', how to ride a bus etc.

Nurture any special interests, while finding ways to use them to help your child learn more about the wider world (for example, a passion for spelling can be used to discuss the names of family members or neighbours etc).

Discourage tantrums by identifying triggers and finding ways to avoid them (for example, supermarkets can often be overstimulating, try using smaller local shops).

Have patience - progress, if and when it comes, can often be sudden but is the result of many months or years of incremental steps forward.

Most importantly of all, know that your child is capable of great depthes of feeling and of love, even if it isn't much or often demonstrated.

30 comments:

Anonymous said...

I have a friend with Asperger's syndrome. Diagnosed when he was not talking by the age of 4 yrs.
He does not have tantrums but shows very little emotion (love/affection). He likes to play video games all day.
How do you know when you are doing something that he is appreciating or is it not worth trying?

hazel said...

Thank you, Daniel, for your wonderful book. I am a single mother and my son has Asperger'ssyndrome. From studying it, I now recognise that I, too, probably have Asperger's syndrome. I have managed to live a fulfilled independent life and your book has encouraged me to believe that my son, 10, will also do just that. He has wonderful qualities which shine out increasingly as he grows and matures. I thank you from the bottom of my heart for the renewed inspiration your book has offered!

Daniel said...

Hi Hazel

I am so grateful for your feedback and am really happy to hear that the book has been beneficial to you and your son.

Best wishes,

Daniel

beverley said...

Hi Daniel
My son has Aspergers although his consultant will not officially give him this diagnosis because she feels he will be labelled. I don't know whether that's a good or bad thing!
He has dreadful phobias and irrational fears- one being dogs - if he sees one he screams and tries to run away. he is completely and totally inconsolable.We have tried to help him and it seems he gets better to the point that he can look at them from a distance as long as they don't come near him but if they appear without warning ie;someones house who has visitors with dogs, he just gets terrified. Did you ever have these type of fears and how did you cope with them.
Our son is very bright,loves God and anything to do with natural disasters. Also what colour is 10?
Do you like this number?
thanks
Beverley

Peter said...

I only came accross your site by chance after reading about Kim Peek, bizarly from reading about Grigori Perelman's proving the Poincaré conjecture. Anyway more to the point just wanted to say that my brother who is 10 is Autistic he loves Top Trumps and has a love for film particularly Bruce Lee and is just learing to read. I find his memory astounding how he can recall (I like the 'double l' in that word) the scripts from films and act out to te letter the dialouge. He also can remember the facial expressions and the motion the charachters are making with after watching a film just once. I hope that he (like you) can enjoy his life as an adult and possibly feel some hapiness - I ask him from time to time about the future and say what will you do when you leave school and he just says "get a job like everyone else - what else would I do". I think that in his current state this may never happen but it would be good if he can harness what is 'special' about him and become a truly great person like you have set out to be. on another note how on earth did you only break the UK and European record for reciting Pi.... don't tell me someone remembers more than you did? maybe to the 30,000th decimal? WOW! anyway hope the book does well and also your language creation - I know my brother would love to hear it!

Anonymous said...

After seeing your interview on the Heaven and Earth show I have ordered a copy of your book and I await delivery with eager anticipation. I have a daughter and son who have Asperger's syndrome. It was reassuring to see that you appear to be coping very well with managing how the syndrome affects you. I know that with alot of patience anfd hard work my children can achieve their full potential.

Daniel said...

Hi Beverley,

10 is a round, shiny number and yes I like it a lot.

Philippa said...

Daniel if you read this i will be very pleased. I have a little 3 year old sister who is on the autistic spectrum and all the things you did when you were a child are exactly the same as my sister, feeling carpets, putting your fingers in your ears etc. While reading your book i learnt a lot about the condition and it has helped me understand it better. I think your a great person and have a lot of respect for you and all the things you've done. Regards, Philippa x

Anonymous said...

hi daniel

i have only just found this blog and heard of your book. i have an son with autism but no learning disability( not AS tho im told) and hes just beginning to express some self awareness about how he is now undestanding that other people dont think the same way as he does. i think hes finding this very challenging and confusing. he's 12 years old .

M

Philippa said...

Hi again, I was just wondering what the best way to stop unprovoked tantrums are? My sister can go on all day having them, and she bites and scratches too, why do you think she might do this? Please reply, Philippa x

Daniel said...

Hi Philippa,

It's not possible for me to know why your sister might be having lots of tantrums; there would be all kinds of possible triggers for her behaviour. I'd recommend that you raise this with your doctor.

Philippa said...

Hi Daniel, Thank you for replying to my last comment,my parents have told the doctor about her tantrums but they just say its to be expected. When you used to have them, what was the main reason, if there was one? If my sister is playin, post the pennies into the piggy-bank,it is impossible to communicate with her, and if you do she goes wild and throws the pennies eveywhere, could this be that she is almost in 'her own little world' with them??

Anonymous said...

I 'm still reading your 'Born on a Blue Day' and am feeling that I have learnt much about my son( who is autistic and highly intelligent )and myself. This book has given me hope where others have given me fear. Thankyou. I would so love my son to meet you as I would imagine you would understand him better than I do. I feel as if I fail him sometimes as I can't always understand him.

Daniel said...

Hi Philippa,

I'd recommend leaving your sister to play her game until she's finished. Autistic people often like to do things in a very precise and careful way and if there's any interference from outside it can be very upsetting.

And thanks to the poster who said that my book gave her hope where others had given her fear. It is some of the highest praise I've ever received - thank you again.

judy said...

Since leaving my first message my son has learnt a spelling 'game' on his 'toy' computer. My husband and I watched in amazement whilst our son demonstrated his new skill with absolute pride. Watching him achieve something like that was very emotional. Three days into his new school term and although relatively mute at school,he has come home each day and gone straight to the 'toy' computer and spent time typing in his answers and getting so excited. Please don't thank me for my praise you deserve it. I have now finished your book and am inspired. My son will definately benefit from all I learn.......

wendy said...

Hi Daniel I've just started to read Born on a Blue Day and I find it facinating so much so that I can hardly put it down and i've almost finished it in a day. My 8 yr old son has just been diagnosed with AS Although I have known since he was 3yrs old, it took a lot of convincing to our GP, health visitor, my sons teachers and the family centre. I find it incredible that they have hardly any knowledge about AS! Also I can't believe how they were all so quick to blame my parenting skills. I think books like yours should be compulsory reading for professionals as it gives a wonderful insight to AS. Your an inspiration to us all! I must add that I wouldn't want my son to be neurotypical because he has such a wonderful way about him and I learn such a lot of wonderful things about the world from him.

Amy said...

I really like your advice. Its simple yet sound. Its funny some of things you describe sound like me. I hate Walmart - its like overstimulation, too much to see - and there is usually a very storng chemical smell - I think they've always just cleaned when I get there! I hated Las Vegas for the same reason.

My mom also had to be creative with R and L and such. I never learned to drive as such things just confuse me.

Autism, and those children who have it have always fascinated me. The workings of the mind. I like what you said about these children having the capacity to love. I think its important for us to realize as well as being very patient. I guess in many ways these children teach us a lot about our selves and the world around us.

Judy. said...

Hi Daniel
I have started using a special toothbrush for my son. It brushes all sides at once. My son actually keeps his mouth open for the entire procedure without the need for a finger guard. Do you have any tips for toilet training?
He's 5 yrs old and doesn't appear to be at all interested in whether or not he needs a wee. He makes an awful fuss if his nappy is not replaced promptly.

Frankie said...

Hi Daniel,

I saw your documentary last night and was immediately inspired by your achievements. I have Asperger's, and have spent most of my life struggling to cope with it, until the last couple of years. These days I'm able to live an independant life at University (studying physics, my life-long passion), an achievement I am very proud of.

It is a wonderful feeling to finally hear of someone else with AS who's able to actually describe how they think and see the world; for a number of years I've been able to do such a thing. Thank you very much for sharing your view of the world with us.

My theory of seeing how the AS brain works has always been that it's wired differently to what some people would call a 'normal person's' brain, with the areas involving logic, numbers, memory, etc, compensating for the weakness in the areas involved with dealing with social interactions.
Some people would describe Asperger's negatively. Although I agree that when dealing with some situations it causes some problems, I've now come to the conclusion that it is also a life-enriching condition in its way, allowing one to see the world with a different perspective.

Anonymous said...

Hi Daniel

I read your book "Born on a Blue Day" in one sitting. My nine year old daughter is a child with autism who has two complex partial seisures last year about 5 weeks apart but nothing since. She is not on medication.

I took the opportunity to ask Anna, "what colour is the number ..." and she told me that the number zero is purple, the number four is yellow and the number nine is green. She has colours for the numbers 0-50 and every time I ask her, she says the same colours. I have written these down and will ask her again in a few months time.

Even though the number / colour association is just one aspect of your book, it was the simplest one for me to talk to Anna about.

Thanks for sharing part of your life via your book.

Best wishes. SAM

Daniel said...

Hi Judy,

I'm afraid I don't have any tips for toilet training. Perhaps speak with your doctor or health visitor and see what they suggest.

Judy. said...

Hi Daniel...
I already did....and that's why I asked you...Their tips are not working for our son. The educational psychologist has suggested we stop trying for a while.....So that's what we'll do.
Thanks for replying and I hope I did'nt annoy you with the question..
On the positive side we discovered our son recognises the alphabet. He got all but one correct when working with him last night . He mixed the s up for an f. We are constantly amazed by things he's doing. We feel honoured to be his parents.

Caro said...

I am my son's chief 'life translator'. We've been through quite a life journey - he had a complete breakdown at 11 when he was finally diagnosed with AS. My husband also has AS and my daughter Tourette's syndrome. All three have OCD: living in our family is quite a ride! My son is now 15 (so no teeth brushing!) and a highly unusual character. Whilst calm as a very young child he is now prone to huge, sometimes violent, outbursts, triggered by the confusion he experiences (other people's errors...) and pressure of his GCSE's. I'm worried about how he'll learn to control these terrible 'fits' into adulthood. Is this just a phase of AS adolescence that you might identify with? He's basically not interested in anyone trying to 'help' him. But I do get one hug a year... on my birthday! We have brought our kids up in the knowledge of God with emphasis on them making their own faith decisions. Our son tells his RE teacher: I like God but I don't want to talk about him all the time. :) May God continue to richly bless you Daniel, Thanks.

Anonymous said...

Hello!

Whether you like it or not, you are becoming sort of a reference for many people facing problems like autism or other mind differences. Of course you cannot have all answers, but what you can do is make your site be a center for advice and orientation for many distressed people and families. Openly exposing what your inner life looks like and how you achieve is a new light for many people, and you deserve consideration and gratitude.

I have not yet read your book but I am quite familiar with these questions. Do you think autism can be related to what is called in French "precocité", that is the peculiar situation of some children whose intellectual development is several years in advance compared to physical age, leading to dramatic emotional and social problems ? The typical result is the child, whose knowledge and awareness is well over the average kid, can not find a comfortable place in school or society, suffers from miscomprehension and retracts more or less deeply in his lonely intellect, unleashing his underestimated abilities in mathematics or other mind-intensive activities.

I often try to compare these concepts. I believe any helping approach should consider this precocity parameter and research should dig these ideas. Are these situations related only at the symptomatic level, or are there deeper cause-effect relations ?

I personally consider autism and precocity not as illnesses but as extreme cases of the human evolution towards intelligence. You are not ill, you are more advanced in one direction than the average human being. Uncomfortable but heroic.

Respectfully yours,
Frank O'Phone

Judy. said...

sounds like Frank O'Phone could be able to answer some of my questions....Any chance of an e-mail address?????????????????????

Anonymous said...

Your brain is fascinating...

I just wondered how a person who cannot tell left from right can in fact ever therefore refer to such concepts meaningfully.

i.e. if the notion left and the notion right are indistinct for you then how could you ever come to understand the concept so as to be aware that you do not possess this power of distinction, since to be aware of the lack of the power must pre-suppose an awareness of the non-inhering concept in your awareness?

Lastly, regarding the landscape of numbers this is very interesting because while I am myself very poor at maths, I have always thought numbers MUST be analogous to shape, since surely two is double the size of one and so on. In fact, it seems true also that there is no other possible (non-arbitrary) analogue of number other than shape (i.e. shape must be the only metaphorically true representation of number), since it is only by shape that quantity can be denoted as shape is by definition extended, and extension by definition has shape (unless empty space be considered also extended).

Justy wondered whether you also agree that there can be no non-arbitrary analogue of number but shape?

Anonymous said...

My son is now 5 and still undiagnosed although the thinking is Autistic spectrum,whilst having delayed speech he does not have rituals,obsessions,tantrums and is a very loving caring little boy. He is struggling at school however he cannot mix with large numbers of children just on a one to one as his conversational skills are poor.His learning is also slow whilst he has a great visual memory he is struggling with group instructions and staying focused. Any suggestions Daniel how as a parent I can help this. I have introduced a number line for maths as although he loves counting and numbers he could not grasp adding and subtracting so this seems to help. Any other ideas would be appreciated.

olsonm said...

Dear Daniel,

I want to thank you for your gift of sharing. So many people fear revealing their true selves. While your story is inspirational for people “on the spectrum”, I also believe it is an inspiration to all of us, reminding us that beauty and good can come from knowing and revealing ourselves as we genuinely are. You are truly a light and a blessing.

I was introduced to your book at church a few weeks ago. The priest made reference to you in the beginning of the very beautiful sermon. I could hardly wait for the service to be over because so many aspects of what he described reminded me of my six year old son in so many ways.

I have just finished reading your amazing story. As a parent, it gives such insight into the possibilities of the “why” or “what” behind behaviors. My son loves numbers and they are so calming to him. Though he describes numbers as having color, I don’t know if he’s truly synesthetic, but the images help me to understand why he can sit in the back seat of the car and enjoy counting into the thousands.

After being introduced to your book, my sister developed a way to help him use numbers when he becomes extremely anxious. It has worked better than any other “intervention” we have tried with his “melt downs”. Your book, while unique to you, gives me so many ideas of how to observe him and help him uncover his own mind.

Thank you again for your courage. Your life story reminds me very much of my favorite quote. The quote speaks of the struggle to be, reveal, and share who we truly are because we fear it will differentiate us and separate us from others:

Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us.
We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous?
Actually, who are you not to be?
You are a child of God.
Your playing small does not serve the world.
There is nothing enlightened about shrinking so that other people won't feel insecure around you.
We are all meant to shine, as children do.
We were born to make manifest the glory of God that is within us.
It is not just in some of us; it is in everyone.
And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
-Marianne Williamson (often incorrectly attributed to Nelson Mandela)

Thank you for letting your light shine.
-Maleita Olson

catherine said...

hi,

i just wanted to say that my brother and i saw your documentry on the discovery health channel called "brainman" and it really inspired me. My brother has an autisim and growing up we never knew it cause it wasnt really around back then and i really had to adapt to the way he thought and percieved things. He is incrediable intelligent and even though he is that smart he was held back in school because of his autisim. Well i just wanted to say that your story has inspired me and my brother that he can function in this world with out needing the help of me or my parents...thanks alot.

Robyn said...

Hi Daniel -
I am almost done reading your book. I have enjoyed it very much. I work as a therapist for children with autism in Wisconsin. I love my job and the kids I work with. Your book has been very helpful in understanding my kids better and helping them. I am in the middle of doing more extensive research on the repetitive behaviors of autism. I plan to attend graduate school and devote most of my studies to research on autism.
I may also try to use your language tutorial to learn German...if you offer that.
Great book - you are an amazing person. Have a great day!