July 2010 Member Q&A: Josie Barnshaw

Hi All

OK, here goes!!

1. What's your story? How are you involved in autism?

The youngest of my three children was diagnosed with Aspergers Syndrome about eight years ago when he was 7. He was noted during his two years of nursery education as being disinterested in others, preferring to be by himself playing with the same toys over and over again, using repetitive movements. He was also noted as having "absences". There was the added complication of severe breathholding resulting from loss of consciousness and complete skin discolouration; it was originally suggested that he might have anoxic reflex syndrome but following testing this was discounted. Following a battle to have him referred and a 3+ year waiting list he was eventually diagnosed when he was 7.

My ex-husband was also diagnosed with Aspergers Syndrome at the age of 49 and I have a neice who, along with several other medical problems, was also diagnosed with Aspergers Syndrome.

2. How did you find Talk about Autism and how long have you been with us?

I dont really recall how I found it, but it must have been through Facebook, as I was a member of many FB autism groups and I have was here for the launch of the site.

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

I have to say that I wish someone had told me not to let the "experts" fob me off with "your child doesnt need ....". Insist that your child gets what they need and use all the tools available to get the best outcome for your child.

4. What has been one of the most difficult encounters you've had with regard to autism?

Two words - "Autism Ignorance" especially among those that are supposed to provide your child with the tools they need to progress and be all they can be.

5. If you had to describe autism in no more than 3 words, what would they be?

Tom decided to have some input here and his word is "beneficial"!! I can see where he is coming from here, decision making is a dawdle for him as he looks at the basics of the dilemma and is completely oblivious to all the incidentals that I have to take into account when I am trying to reach a decision.

6. Do you have any Summer holiday suggestions or advice for people with autism?

We have always gone camping, caravanning or self catering holidays where our plans dont impact on others and have found that usually works best for Tom. We dont usually go long holidays but rather day trips to weekend/long weekend camping trips. Of course this is down to Tom's intolerance for long spells away from his familiar surroundings.

1. What would your dream holiday be?

I dont really have any particular dream holiday, but I have been a couple of holidays many years ago back to my mother's native country of Ireland and love it over there so I would like to be able to go back sometime.

2. If you got stranded on a desert island, what 3 things would you take?

They may sound like madness ... but it would have to be my three kids, for all they drive me crazy most of the time, I would be lost without them. Tom and Rick could build one of those "up in the trees" houses and Tom would be in his element inventing labour saving devices.

3. Tell us about something that you really enjoy doing.

Gardening is definitely the No 1 of my favourite pastimes, although I also love family history/genealogy, so gardening in the good weather and research in the bad weather. I do occasionally do some housework, honest!!!

Josie - Community Champion

Hi Josie,
Just a quick question if u dont mind.....u mentioned your son was noticed to have 'absences', I was just wondering if he was ever diagnosed with having some kind of epilepsy or whether its an autistic thing where they are very zoned out?

My almost 2 year old who is possibly autistic ( no diagnosis yet) does this and it concerns me as I have a daughter who does have epilepsy mainly having absence seizures. I can wave my hands in front of his face and he doesnt notice! Just like my daughter.

It was on my question list for when we see the doctor again in September but thought I would just jump in with a question to ease my mind a little or decide if its something to contact the doctor about sooner.

Thanks, Mel x

Hi

Mel - He was tested for epilepsy mainly because at the end of the breathholding episodes he exhibited signs of seizure, rigidity, arching and twitching limbs, but all tests and scans were clear. It was then put down to him just being somewhere else in his head. His teacher's did wave their hands in front of his face and say his name loudly but with no response. As he has gotten older he often tells me that a teacher has been talking to him and if they are saying something that he sees as them treating him like a baby he blanks them out in his head so perhaps he was doing something similar when he was younger.

Tracy - Certainly for many years myself, his friends and work colleagues felt he maybe was bipolar (it was called manic depression in those days) as he was never middle of the road in temperament but yo-yo'd quite dramatically from euphoric to depressed, but he thought it was all of us that was out of kilter and not him and therefore he would not consider seeking medical advice. I have to say that like many people 30 years ago I had never heard of Aspergers (and I worked in the NHS) so I didnt connect his poor social skills, language processing issues and what I now see as being major meltdowns with a medical condition but rather with his upbringing which (according to him) was difficult and therefore also clouded the issue. The first time I saw a leaflet on Aspergers I immediately connected the list of possible traits with my ex-husband. My ex-husband was actually diagnosed a few months before Tom as his mental state had become critical and he was assessed as a matter of urgency. His mood swings and anger issues have been treated with some Cognitive Behavioural Therapy and he is also on anti-depressants for life. This has had a positive effect, but of course, could be improved upon if he wasnt combining it with high levels of alcohol consumption.

Damian - My mother was from Co Donegal and my paternal great grandfather was from Co Sligo. I havent been back to Ireland since my mother died about 20 years ago although I have always intended to go back but just never got round to it. Maybe one day ...

Josie - Community Champion

Good afternoon Josie!!

In lots of the chats we have had, its become clear that Tom and Hollie are pretty similar - excessive talking, science rambles, computer hackers etc...! One thing I wondered was about how they were different too (apart from the obvious!) Hollie's biggest disabling problem is her anxiety which, as you know, has lead to some mental health issues....as we are now coming out of the worst, I was wondering if Tom ever suffers with anxiety and what you do to help him...if he doesnt, how do you think he avoided this?

Also, so you see any fundemental differences between girls and boys with AS? (again apart from the obvious!)

Claire - Community Champion

Hi Josie and bumblebee,

Firstly Josie, thanks for answering my question, those breath holding incidents sound terrifying, I`m glad they`ve passed for him. It must be easier when a child can explain the things they do, I feel like I need to develop my mind reading skills with Luke at the moment. If only.....oh and by the way I would be crazy and take my 3 kiddies to a desert island too lol

And Bumblebee, thanks for your comments. I`ve decided I`m going to note down any that I see to get an idea of frequency and contact the doctor if they increase alot. I think if they are seizures we would be very lucky to pick them up on an EEG as he doesnt do it loads, not even every day at the moment. ( My daughter was having more than a hundred a day at one point). And I'm still going to keep it on my list for our doctors appointment in Sept to see what he thinks about it.

Thanks again both of you
Mel x