raising children with autism website

The new government funded website (see http://raisingchildren.net.au/autism) was launched at Parliament House on 23/2/2009 (see here for details). At this stage it contains a range of initial information. Its authors want to expand it and for it to be dynamic. They are interested in feedback, as is A4.

What do A4 members think of the initial information on the website and how it is presented?

Do A4 members think this will be a useful resource in the longer term?

What can be done to help people who need this website find it?

I think the website developer are brave to provide the type of commentary they are on various treatments/interventions. What they have so far is pretty minimal. Hopefully it will be helpful for its target audience, that is the families of children who are newly diagnosed with an ASD. What do you think?

Please tell us your views. If you can suggest improvements to their website, please let the website developers know.

Forums: 

raising children website

***What can be done to help people who need this website find it?***

Perhaps the Federal Government could establish the website "www.autism.gov.au" and put the contents of the Raising Children website on this.  Or redirect to the Raising Children website.

Possibly targeting Paeds and childcare centres or Maternal and Child Health nurses to refer parents to the site rather than letting parents Google on their own.

***What do A4 members think of the initial information on the website and how it is presented?***

I like it.  The information is not overly simplified, but is not too hard to follow either.  I guess it depends on who the target audience is.  My son is newly diagnosed, so I've found the information to be what I'm after.  Further down the track though I will be seeking info about education, socialisation and other matters.  I amy also be biased on the website content.  We are using ABA so my views might be different if we were wanting to use a therapy that is not covered

What I really want to know about now is the evidence behind playgroups and how to socialise children with an ASD.  So I guess there is room for a lot more info

Education

Lots of information on early intervention but what about children who have been in school for some years and support services for them? And again when they reach High School age.

Education is a must for every

Education is a must for every child and recent news that I have read is that the government of India has introduced a bill in Parliament that gives children in India that 'Right to Education'. I think is brilliant, every child must have access to education and in doing so the country is giving hope to millions who cannot afford basic education in that country.

Jane

I found it hopeless for same

I found it hopeless for same reason. My son is grade 9 this year and I still can't work out what services are applicable for him as a teenager! Google searches brings up Raising Children but it's totally unusable info for what I need!

raising children website

I had a good look around the site, and the initial information is good, clear and concise. The statistics are up to date. However, the articles e.g. Discipline, etc are absolute rubbish - not suitable for parenting of a child with Autism or Asperger's Syndrome. For example, the instructions used in the article are 3-step. Total rubbish!

Dynamic? My honest feedback..."Hopeless!"

I checked out this website and it's still 50 mins later uploading "my neighbourhood". Hopeless! If I was desperate, I'd be in tears by now. The internet is a great resource, but "cut the crap".

My daughter was diagnoseed "officially" by a so called "panel of government approved professionals" at 2 years and 7 months but I knew long before then...but the so called "professionals" didn't. Mums and Dads, listen to your heart. Early intervention ABA DTT is the only way. Every small heart wrenching step is a big step. I know. My daughter is the living, breathing example of what so called "recovery" means. I recently had a relief teacher ask who the student in her classroom on the autism spectrum was. She was surprised to find out that the child was my daughter, the most articulate, creative child in the room...surprised? I was. And so relieved that I'd paid the bills when I took her to ISADD when before she was 2 years old.

I ensured she had the 30 to 40 hours a week she needed to give her the best opportunity available long before her "official" diagnosis. I ensured I attended the 10 week course on parent training to be a therapist. They ensured I had the skills to fill the gaps in therapy I could not afford to pay for. I became my child's therapist. It was the best hope and the best gift they could give me. And it worked! The company that helped me when no one else would, was ISADD. They were the answer. Now, I have no doubt that she will lead a full, independant life BUT if it wasn't for their Psychologists, Program, Case Manager and Behavioural therapists, I have no doubt that she would have regressed further still into her own world, to remain there forever, oblivious to the child she is today.

When asked by the panel 8 months later, why I "wasted their time" as she was already recieving professional treatment (I waited because I needed the funding help), I answered "If it were your child, would you wait?" Suddenly all became clear, and yet nothing has changed, and ask you all "Why?"

She is now 9 years old. The third of 6 children. I am so passionate about this cause, I give up every hour of my day to ensure others do not experience the loss and grief I felt all those years ago. Devastation and Grief were my companions but I never lost hope. Yet, I read numbers of children diagnosed are on the increase but even now, the "high and almighty politicians" that I wrote to in Canberra tell me that I'm wrong, and that statistics remain at 1 in 500.

I ask you, who has their head buried in the sand? Why won't they listen to common sense and reality? Because those families suffering with indescribable difficulties daily are the least equipped to lead the charge for those they love the most. They can barely make it through the day. Whether they are in denial, whether they are suffering on the waiting list for 12 months or more, waiting for a professional to hear their plea because they do not have the funds to visit and pay for them privately...I am not here to judge, but to help.

I am your voice. I listen. I know. I want change.

And as I write this impassioned plea to you, this website is still trying to load the map for Perth...what is the government feeding us? Are you satisified? I'm not!

I just found the "contact us" page:

Please complete this short form and click "submit". We value your comments and suggestions and although we read each and every message, we can’t always provide a personal response. Nor can we offer parenting advice via email, so if you need immediate help, contact the parenting helpline in your state.

Please let me know if I leave feedback, will it be valued? We they respond?

So right now, all I can say is..."How heavily funded is this website? And, of what use is it to anyone?"

I am a parent. There is no greater resource. Am I paid? Of course not...am I offered opportunities. Of course not...Can I help? Of course I can...Who will join me?"

I cannot do it alone. Can you help me?

I had a look around the

I had a look around the website. It seems like an OK start, however ...

  1. Relatively few of the early interventions offered on the HCWA Early Intervention Panel are actually described on the list of therapies on this website (see http://raisingchildren.net.au/parents_guide_to_therapies/parents_guide_to_therapies.html). There needs to be more consistency between the various parts of HCWA.
  2. It is unclear where to go for information ... the Positive Partnerships website has a 'fact sheet' about GFCF diets (see http://www.autismtraining.com.au/controllers/assetController.cfc?method=serveAssetFile&assetId=184) but this website doesn't provide information.
  3. The Autism Services Pathway section including My child has an ASD diagnosis, what do I do? does not mention the Autism Advisors setup by FaHCSIA as in their part of HCWA. The advisors are mentions on the pathway picture ... but it is not so clear how you contact them.
  4. It is easy to wander out of the 'autism' section of the website into areas that describe generic services ... that will not be relevant to children with autism/ASD. This will not help anyone.

It needs a lot more work.

 

Real assistance

I can see the intention is to provide information, however as an ASD woman with an ASD child it merely highlighted the following:-

1. Many of the therapies are either not available in Australia or are unrated - no news there;
2. Autism is a diagnosis with 2 main prognoses - the first appears positive and attainable providing you have enough money to try the multitude of therapies. The second prognosis is that if you are struggling financially, or you or your spouse is ASD and lack any support as ASD adults to find employment etc, then bad luck - autism is really only for the wealthy.

So excuse my cynicism but do I really need to become even more disillusioned with the lack of meaningful response to ASD in Australia? All I see is public funding used to display the socio-economic disparities in assistance. This will only demoralise many struggling parents as the web-site merely collates what we all find out very quickly after a child is diagnosed anyway - that many of us cannot afford to help our children. This is especially relevant for girls, who are usually diagnosed well after the early intervention funding age, and whose diagnoses and presentation still remain shamefully unacknowledged and dismissed as being "mild" compared to boys.

So this web-site simply made me feel guilty about what I cannot do for my child. It told me absolutely nothing I didn't already know. The rich get better and the girls get nothing.

And yes, I am hoping that last sentence stimulates discussion.

Good concept

Such kind of concept can really do the best for the children in the virtual world. So that the rest of the world can open their eye on the children. And of course manifolds of comments can be supportive for making new strategies. Whatsoever regarding the topic I have my own attitude on this regard that critical care jobs for the welfare of the children can add the value of this vital campaign.