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A survey for parents of ASD children. Drop round and find out more about this important research!


Northumbria University

Northumbria University

Laura Czekirda of Northumberland University is conducting some research into parents of children with autism! Czekirda says “I am currently recruiting participants for my study which is for my dissertation. I am recruiting parents who have a child with autism 3-19 years old to assess the affect locus of control has on their health and well-being.

I am recruiting for my study which involves assessing the psychological and health correlates of locus of control, the feeling that you are in control of your life in parents of children with Autism or Down syndrome, and parents of typically developing children. For more information, and to complete the short survey, please use the following link:

https://www.surveymonkey.com/s/LZ_Caregivers

This study and all its procedures have been approved by the Faculty of Health and Life Sciences Ethics Committee at Northumbria University.
Please forward this to your friends. Your contribution to this extremely worthwhile project is gratefully received.”

If you have any questions about the study please use the comments box and we will ask Ms Czekirda  to respond.


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“Travel my journey before you judge me” – Behaviours that parents of children on the autism spectrum find most stressful and difficult. Karen Brown reveals the results of her recent research

Autism Awareness

Autism Awareness

In this guest blog Karen Brown shares the results of her recent research in the behaviours of autistic children and the challenges to parents.  Brown says “I am very grateful and thankful to all the parents who took the time out of their already busy lives to complete my survey. A lot of parents passed my survey onto others, and many parents gave me encouragement, positive feedback, and took the time to personally contact me. I admire and respect their attitude and dedication to their amazing children. Thank you to my beautiful children Justin and Chloe, who have inspired me to learn all I can about ASD and gifted me with the experience of seeing the world through different eyes. Thank you to my supervisor Associate Professor Cyril Latimer, who answered my emails so promptly, gave advice, yet encouraged so much freedom, and supported me when I need it. “

 

The purpose of this study was to research what behaviours parents of children with ASD found the most challenging, difficult and stressful. Total response rate from parents was excellent with 417 responses at the time data analysis began. After controlling for missing or incomplete data, final number of participants for statistical analysis was 348. Of the 348 respondents, 219 requested a copy of the results.

There were 333 female parents and 15 male parents from multiple countries around the world: United Kingdom 71, Europe 9, United States 120, Asia 4, Australia 112, New Zealand 10, and Other 22. Information for the children was: 77 female, and 271 male, with 266 under the age of 12 years and 82 over the age of 12. Category of diagnosis was segmented into autism 129, Asperger’s 169, and PDD-NOS 50.

Investigations of child gender revealed no significant effects on parental stress, therefore indicating gender of child is not linked to higher or lower stress in parents. Diagnostic category of Autism, Asperger’s, or PDD-NOS was also found not be linked to parental stress, with no difference in parent stress found between the three categories.

Age was segmented into two group of over 12 years of age and under 12 years of age. Age was found to be linked to parental stress with parents of children under 12 years of age experiencing significantly higher levels of stress than parents of children in the older group.

Questions from the survey were segmented into four groups representing the categories of development, behaviour, future and stigma. All four categories were significantly related to parental stress. The most significant category related to parental stress was stigma, followed by behaviour.

The questions with the highest means for stigma were: “How your child is viewed by other children?”, “How your child is viewed by adults?”, and, “Your child displaying difficult or challenging behaviour?” Questions with the highest means for the category of behaviour were: Anger and outbursts, Child’s behaviour being the focus of attention, and, Screaming and yelling.

Highest rated questions for future were: Future outlook for your child for close social relationships, Future outlook for your child’s employment, and, Future outlook for child’s romantic relationships. Questions with the highest means for the category of Development were: Being included socially, Ability to make and retain friendships, and, Sensory difficulties.

It was clear that the main concerns parents had were in relation to the stigmatisation of their child, friendship development and the children’s acceptance by their peers. Challenging behaviours were strongly related to parental stress and the stigmatisation that parents felt when these behaviours were in public was also significant.

Feel free to use the comments box to ask any questions or comment on the results of Brown’s research.

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Autism and Genetics – Please take our poll about family and Autism inheritance

Autism Awareness

Autism Awareness

Thanks for dropping round to our latest autism blog.

Over the last few years quite a lot of work has been done exploring the idea that autism may be an inherited medical condition. Indeed having more than one sibling with autism turns out not to be as uncommon as once thought.

Indeed not just is our son autistic but so is one of his cousins in Australia.

So, of course, I’m very interested to see if this is reflected in the experiences of our readers.  Is there more than one person in your family diagnosed with autism?  Or deso more than one person show autistic traits?  Both are the case in my family as delayed speech is very common.

It would be great if you could take our poll below.  Feel free to use the comments box to add any more thoughts you may have on autism and genetics.

Many thanks in advance


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Autism, Exercise and Occupational Therapy – What are good types of OT for children with autism?

Swimming as OT for autism

Swimming as OT for autism

Before I start the blog post proper I want to get something off my chest.

As readers of this blog know, our seven year old now attends a ResourceBase rather than a mainstream school to access learning.  One of the key reasons from our point of view was that his old mainstream school was not able to provide him with the Occupation Therapy (OT) which, according to government and healthcare officials, he needs.  The ResourceBase would be able to meet  these requirements or so we were told.

Well, on Tuesday we met with his various teachers at the new school and were rather surprised to be told that he had received no formal OT that term.  The reason was that even with daily phone calls from the school the relevant authorities had not provided one until that week.  Even then this OT support would end with the current semester.

So not exactly what we bargained for.  I have to say I’m a bit troubled that even the school have asked us to complain to the relevant local government department.  Which I fear will give them more chance to prevaricate and not deliver what they have agreed to.   Out of interest, do you have similar issues with statutory funding/support for children with special needs where you live?  If so please add your thoughts in the comments box below.

Not to say that our son gets no OT support.  The teaching staff and my wife and I provide as much as we can but none of us is an OT professional and I’m concerned our son may lose out.  For John OT is particularly important because of his handwriting and concentration issues.

The main theme of this blog is not a whine, in fact.  It is much more about what we can actually do with John.

While both we and the school do OT exercises such as the wheel barrow, his main love is swimming.  It is great for both co-ordination and self-esteem.

Originally we just used to take him to our local pool each week or so.  But when he went to his new school we decided that he would benefit from proper swimming lessons.  As luck would have it, only ten minutes’ walk, from his new unit there is a swimming school which provides special needs swimming lessons.  (At a discount as well).  Due to his autism he has a one-to-one session rather than learning in a group situation.  Which is sort of a shame but necessary in our son’s case.

 

Here I’d like to pay tribute to Keith, John’s teacher.  Not just can he put up with our son, he demonstrates the patience of Job.  Indeed they were introduced when John was having a full scale melt down but around five minutes later he was in the pool immersed (in both senses) in his lesson.

As a point of information Keith uses John’s interest in space and science fiction to provide an imaginary framework for the lessons.  So a take away for other autistic parents who want their child to learn something like swimming  is to use the childs special interests as a way of getting them to embrace the activity.

Obviously for any autistic child progress is not as straight forward as we would like but in eight weeks real strides have been made.  He has moved from the doggy paddle to nearly being able to crawl and do the back stroke.

That being said I’m interested to know where we go from here and your advice would be much appreciated.  For example I’m very interested in the following questions:-

  • Does your child do any sporting activity?
  • How do you encourage them to participate in team as well as individual sports?
  • What sort of OT support does your child receive?
  • What difference has exercise and sport made to your child?

 

Thanks very much in advance

PS I have to say Keith is a marvel and I have every intention of getting him a bottle of Bunderburg Rum for Christmas by way of thanks.

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Autism and Education Part Two – Compromise or Half Way House? Our Autistic son’s educational journey explained. What is your child’s journey!

Autism Awareness and EducationChildren

Autism Awareness and Education

Sorry about the odd title but this is one of those opportunities to write a more personal blog about autism than usual.

As you may know we have a seven year old son who was diagnosed just over four years ago with what can be described as classic autism.  Pretty much since the day of his diagnosis on 1st September 2009 (around 11.00am) (yes I do remember without having to look it up) he has been in the education system here in London, England.

Just before his third birthday (I should mention that he showed serious regression around his second birthday) he entered a kindergarten/nursery which catered for pre-schoolers with autism.   What was novel, at least for me, was the nursery was part of a mainstream school.  Referred to as a ResourceBase it provided a specialist autism unit which existed within and was supported by the mainstream primary school.

The hope was that pupils in the unit would move on at the ages of 4-5 to a mainstream school, having been provided with the tools to be able to cope in such an environment.

Our son, after two years at the unit, progressed to our local primary school.  The first year, we all felt, was a success for him and the school.  However, he experienced a great deal of difficulty at the age of 5-6 dealing with the more formal instruction provided by the school after the initial year.  I have to say here that both his teachers and his support workers were absolutely brilliant but it was felt, and we agreed, in the short to medium term that our son would benefit from more specialised support.

So you can imagine our delight when we found out that another school in the areas was providing the same ResourceBase education.  This time for children aged 4-11.    After a certain amount of waiting around he was offered a place.  The key thing about this approach to educating  ASD children  is that, while they are based in a specialist unit, around 50% of their time is spent in mainstream classes with their own age group.

While the transition from mainstream to specialist unit has been hard, (he hates changes in routine!) we have found, two and a half months in, that we now see some real improvements.

Firstly he no longer cries when he has to go to school.  Yes, a bit of complaining but nothing like the previous school.  Secondly he is starting slowly to make some advances in academic work.  Indeed this morning on the way to school he asked me how various words were spelt.  You cannot imagine my delight – this has never happened before.  Unless you count his discussion about numbers yesterday afternoon.

That being said, making friends still seems to be hard.  He does seem to prefer the company of neurotypical children.

So, all in all, for our son the middle path between mainstream and specialist school seems to work.

So what about you?  I’d be really interested in finding out a bit more about how our readers with autistic children have fared in the education system.    You may wish to think about it in terms of the following questions:

a)   What was the exact diagnosis of your child and at what age were they diagnosed?

b)  How would you describe their overall profile in terms of behaviour and cognition?  What are their biggest challenges?

c)    What sort of education have they received?  Do you follow any particular strategies both at home and at school?

d)  Have they changed schools during their education because of their ASD?  Please tell us how this transition has worked out.

e)   How would you, in a perfect world, have had your child educated?

f)     What advice about education would you give to somebody who has just has their child diagnosed with autism?

Please feel free to use the comments box below to share your child’s educational story.  You can read the first part of our autism and education series here https://patienttalk.org/?p=977

Thanks very much in advance.

 

LindaGiguere I Really Enjoyed Reading This Post. While I’m Not The ParenT Of AN Autistic Child, As A Teacher I’ve Come To Know Many.
lovemyboy charlieandme234 lovemyboy  I am glad the dyslexia has been recognised. It is sometimes argued that the frustrations of dyslexia cause all the behavioural issues so they may be trying to wriggle out of a autism diagnoses that way. If your son is anything like mine then the meltdowns are way more than that. Many children at the ‘higher end’ of the spectrum do make friends and do make moves to be social it is not until the rules get more complicated and the other children more observant that the problems really start. My son has only being having problems in the last year it started with party invites dropping off and now he is down to one friend and being bullied. Not trying to worry you but I would just encourage you to get a full assessment done. I was also told for many years that ‘he has friends so can’t be autistic’. My brother was diagnosed with aspergers at 27 (he was diagnosed in school with dyslexia), he made friends and didn’t have issues with other children until secondary school. Good luck and I hope the conformation of dyslexia helps with your sons reading and writing. x
charlieandme234 lovemyboy charlieandme234   hi there we have just had a cognitive report done and we have been told that he does have dyslexia  which is a great step towards helping him at school but now they are say they are not sure if he is autistic  because he is to social so we are back to square one it is driving me crazy  we have another appointment with a doctor to get him another assessment. hope things are  getting better for your boy
lovemyboy charlieandme234  My son is also seven (coming on 8).He could not read or write until six months ago. He has been waiting for an assessment for ASD with an expected positive diagnoses (at the asperger/higher functioning end). He goes to a mainstream school at the moment and has terrible problems with socialization, I agree totally that our sons do not need fixing, it is the other children’s reactions to my sons attempts at friendship than anything he is doing ‘wrong’ that are the problem in my eyes. The turning point for my son was when he had a test for dyslexia (which is not uncommon to run along side ASD) and is now getting schooled in a way that he understands, he has really flown since and has almost caught up with the other children in reading and writing. It is very important that each child is taught in a way that they understand (they have not failed to learn, the education system has failed to teach). Good luck with it all. x
charlieandme234 my son is 7 and still can not read or write and it was thanks to his teacher we got a diagnosed and for thank i am very thankful many people thought it was that i need to discipline him more  or feed him more fish oil and less junk food. The teacher thought it was ADHD but when told it was autism and that he was social and emotional age 3 she understood him more and has done everything in her power to help us. we are not waiting on a cognitive report to see how best to help him learn as the doctor told us it is not charlie that needs fixing but everyone else. It’s still not easy when everyone is looking at you with judgment in their eyes when he is having a meltdown after school or why he is always caring around his monkey teddy but we continue to try and education these simple minded people and carry on focusing on him and his education and always telling our self that is will not last forever
RaeRae1 Don’t any other parents feel like they are autistic too?  I feel that way.  Which makes it harder to work with the system I suspect.
My 13 year old son was diagnosed with ADHD when he was 5, in kindergarten.  It was too much, and I ended up taking him out of school and homeschooling him until 3rd grade, and we found a neat little charter school in it’s prime, it was a natural sciences environment where he thrived for a year until they made too many changes and moved away from the nature aspect. During this time we got a diagnosis of autistic spectrum disorder with some comments and a little social and physical therapy. I then home schooled him for half a year and got sick myself so ended up mainstreaming with an IEP for 2 years, which was mostly a struggle and I had to be in constant contact with the school.  I feel rather disagreeable towards the constant interaction required for him to be treated humanely.  He’s now in 7th grade, a specialized program full of kids on the spectrum where he goes to regular classes but has extra support and supervision.  It’s hard to tell how that is going, because he got mononucleosis (Epstein Barr virus)  from drinking from the school fountain how only an autistic kid would, so he has missed probably 2 months of school and it’s only December.  But the bullying there seems pretty severe the times he does make it, so I am leaning towards trying a community college type approach or one of the online schools so he can still get the education he needs, but I would need to find some social therapies to involve him with if I go that route.  It’s a constant challenge for me, as he is where I stopped being able to attend regular school as a child, but never having a formal diagnosis I never understood why it was so hard for me.  I did great in college etc. but my challenges never were academic.  The change and number of people and harshness of everything just seems destructive to my world, and I wonder the point of acclimating a child to it when even as an adult they will not tolerate it well and will find ways to work away from those environments.  Anyhow, that’s just my two cents.
missyj6342 I have a son who is now 14. He was not diagnosed with Autism until the end of his fifth grade year of school. Up till that time we were told my son had ADHD and teachers and doctors were treating him as such but I knew their was something more to it. In elementary school setting he was primarily in mainstream class with resource help. But when middle school came and classes became harder and beimg popular was important my son regressed hugly. The school he was attending was not suited for a child like my son and the teachers couldn’t “handle” him. They tried to place him in a special day class and that made dealing with other students more difficult. My son was not meant for that type of class because he was not so slow in learning, he had more difficult time socializing. After only one year their with whay seemed no help from that school I decided to fight our school district to send him to another school. I foumd a school with a program that was for children who had more emotional issues then learning issues. Where he was taught everything in a mainstream class but this class was smaller and the students all had emotional behavior.this helped my son learn to cope with classes his emotions and the issues of being a preteen and teen. Now in high school. My son is taking all mainstre am classes with 2 periods of study skills where he is learning how to handle differwnt social environments and social cues. I truly feel that had I not changed schools and look for an alternative that my son would have continued to regress. Now at 14 he is thriving. Doing great academically and socializing in the minimum but still willimh to try