Stories: A Tale of Two Services
Our youngest child was diagnosed with type 1 diabetes over the weekend, which naturally has rather upset the whole family and will take some time and effort to get used to. But while the memory of these first few days is fresh, we think it might be useful to account for some of the very stark and instructive differences we encountered in the early intervention for our son compared to when our daughter was diagnosed with autism, almost precisely two years ago.
We shall note for a start that they were both diagnosed at three years of age. Although when we say that Lucia was diagnosed, that isn’t quite correct: she was referred to the specialist services of our District Health Board after an informal assessment by a speech therapist contacted via her kindergarten. The DHB came back with a letter stating that she would be unlikely to be seen for a more formal diagnosis before nine to twelve months, while educational support at kindergarten wouldn’t be provided before six to nine months. And… that was it. We didn’t receive any psychological support or information or any other form of assistance, except in the form of a very small weekly disability allowance – but only after we saw a paediatrician privately. Nobody from the DHB had in fact even told us that the allowance was available.
Now compare this:
Our son Ambrose was admitted to the Accidents and Emergencies Department of Wellington Hospital last Saturday afternoon. Before the acute stage of the illness had even been resolved, the diabetes nurse and the doctors had begun to explain to us the nature of the disease and how it would impact on his life and ours. It was a patient instruction delivered with the utmost sensitivity and care by a well-coordinated team of professionals with clearly defined roles. They all stressed that the ultimate aim was to allow us and later our son to manage his condition and grow to share as much as possible in the same experiences and lifestyle as his peers. (Think about that statement.) By the time Ambrose was discharged, three days after admission, we had seen two diabetes nurses, several doctors, a dietician and a social worker, and had been given a great deal of information not only on how to manage the disease on a day to day basis but also on how to access further publicly-funded support and services. (And, yes, the form to receive a separate disability allowance.) We remain in regular telephone contact with the child diabetes specialist and the diabetes nurse, know what kind of situations are likely to arise and whom to contact if we need information or help.
None of this was the case for Lucia. We were lucky to know advocates and people with autistic children and to have the means to tap into their knowledge. We were even more fortunate to be able to afford some of the help that we needed. But the fact that we could provide shouldn’t be allowed to cover for the fact that we were left to fend for ourselves, and that we (and Lucia) could really have used a great deal more help by a more caring and philosophically robust service.
Now you could opine that diabetes and autism are fundamentally different conditions that require fundamentally different types of intervention. But are they in fact so very different? A diabetic who is denied insulin might die. An autist who is denied specialist psychological and developmental support will fail to thrive. So long as the objective of a fair and equitable public health service is not simply to allow individuals to exist, but also to participate in society as equals, the two services should operate in broadly similar ways: which is to say, by seeking to empower families, schools and communities to care for and include the little boy with diabetes and the little girl with autism. Equally.
And if you still think that no, the two situations aren’t comparable, consider this kicker: one of the services offered to us as parents of a diabetic child by the DHB is a psychologist, in recognition of the impact of the disease on sufferers and their families. It happens to be the same doctor that we’ve been seeing, and who has helped us immeasurably, in the last two years with Lucia – but with her we’ve had to do it privately, since apparently nobody thought that the parents of an autistic child could use something like that.
Justine Fletcher, Giovanni Tiso
Hilary wrote on April 15th, 2011 at 11:02 am:
Thanks so much for sharing that, Justine and Giovanni. Best wishes for the future.
I hear there will be soon be provision of a couple of hours a week of autism coordination available through our district health board (for the whole region). It will probably be added on to the work of someone who already has a full and busy job, and possibly with no interest or expertise in autism.
John Greally wrote on April 15th, 2011 at 11:47 am:
Thanks Justine and Giovanni!
It is so helpful to see a proper comparison between two conditions that serves to so dramatically highlight the inadequacies and inequalities of Government efforts in the ASD field.
We are repeatedly told there is no workforce, no services, no expertise, (no clue!) and no funding to get on with closing the glaring gap. If it demands a fundamental revision of where the health dollar is directed, and I do not believe it does, then let that happen now anyway. Those with two prosthetic legs can return one for sale off-shore and learn to hop, just like all the autism parents have to hop around everywhere to piece together some semblance of a service when they have finished waiting forever on a contrived list and squeezing past utterly irrelevant criteria (like the need for their child to have an identified low IQ when it is the lop-sidedness of their IQ that is the real issue).
Thank you.
Helen wrote on April 15th, 2011 at 12:25 pm:
Thanks HEAPS for this post, guys. It actually bought me to tears because my family has just been through a couple of years of the autism diagnosis process and it is still pretty raw.
When our child was first diagnosed, I was gobsmacked at how casually we were told, then the health workers left and I said to my partner: “They didn’t even give us a f**cking leaflet.” There was nothing! We were just expected to integrate what had been a huge emotional blow and move on. Luckily for our child, we are educated, and highly motivated to seek assistance. I fear for the autistic children of families in less-fortunate positions than ours.
I had an assessment for assistance with Support Links last week and the worker asked me what would be most helpful, apart from respite care. I asked if there were any free or subsidised counselling services for parents of special needs kids. She said there was not.
Anyway, before I write a long essay….I mainly wanted to say thanks heaps for bringing this issue to light.
All the best with both of your children!
Helen
James wrote on April 15th, 2011 at 4:55 pm:
The diabetes team in the CCDHB are fantastic. We, like you, experienced the best of care when our son, 17 months at the time was rushed into A&E in wellington, and diagnosed and cared for properly.
At the end of the day, it all comes down to people, and if you have got the right ones, like Lindsay, Esko etc, then you have faith in your public service.
Diagnosing a mental health issue isn’t as straight forward as we like it. I have a close relative who has had all the labels put on them as from the age of 8, was diagnosed incorrectly each time they were seen. 10 years on, and it’s finally been resolved and medicated, but the sadness and stress it put them through as well as the extended family makes you place less faith in the public health system.
People ARE human, and unfortunately 1, they don’t get things right all the time, and 2, when they do get it right, loopholes or long waiting lists sometimes make the patient and/or the family have to take action to push (and push and push) the communication through the health system chain until you find the right person or team.
You’ve done the right thing by making an appointment yourself with the private system. It does cost, but these days its better to pay to actually have a voice in this world!
We were recently made aware of another local 3 year old diagnosed as we had just been to diabetes clinic yesterday with Leo, now 3.
It’s funny how we found out who you are through this blog before we got to meet you in person
Hopefully catch up at the children’s next youth function.
with warm regards, James
Giovanni wrote on April 15th, 2011 at 6:27 pm:
Thank you James – I think we heard about your boy from Lindsay and we look forward to meeting him and you soon.
“At the end of the day, it all comes down to people, and if you have got the right ones, like Lindsay, Esko etc, then you have faith in your public service.”
I don’t want to take anything away from the very capable and dedicated people we’ve dealt with over the last few days, but there are many of those in autism services too – it’s just that they’re not put in a position to be at their most effective and make a real difference. Lack of funding has a lot to do with it, without a doubt, but it is my impression that autism suffers primarily from a philosophically muddled and poorly coordinated approach. There are a lot of overlapping services between education, health and independent agencies, a lot of duplication and dithering, so a more robust framework would make what little money there is go a lot further; but what is needed in my opinion is a radical reform of the sector that reorients all the services towards the objectives stated in the post – to allow children to be included in education and in the social life of their community from day one. As Helen says, the current situation is unacceptable. Having to wait one year for the formal diagnosis is incredibly demoralising and sends a strong message that the state places little or no expectations on itself when it comes to helping your child develop. This in turns teaches you that you cannot expect much of and for your child.
Hilary wrote on April 15th, 2011 at 10:57 pm:
This site needs updating. No button for sharing on Facebook or Twitter!
Helen – what area are you in? No professional counselling but most areas have some like-minded parents to talk to, through Autism NZ or other local organisations like Parent to Parent.
Helen wrote on April 17th, 2011 at 12:38 pm:
Hi Hilary-
I’m in the Manawatu and in contact with Parent-to-Parent, which has been great.
Cheers,
Helen
juries wrote on June 20th, 2011 at 3:27 pm:
I shed tears reading this heartfelt article..I don’t have experience in dealing with autism but I barely feel the need to be self educated when caught in this circumstance. This an mind booster that every parent must know.