Saturday 20 May 2017

Why is the Autism Spectrum Disorder diagnosis process so draining?

I am often asked about the ASD diagnosis process particularly by families who are about to embark on the process and also by those who are genuinely curious as to how Autism (ASD) is diagnosed. The two points that I initially always tell them is that the process is very long and it can be very draining. Hopefully by the end of this post, you will understand why.

The entire process from start to finish, at times, can take several months. L's diagnosis was over and done with in about 5 months. O's diagnosis has taken 7 months and we are still waiting on the reports.

As you read the following post please keep in mind that this is generally what happens in Western Australia. The diagnosis process does differ from state to state and from country to country. What stays the same is the criteria that must be used during an ASD diagnosis - the DSM-5.

To start the ASD diagnosis process for a child under the age of 12 in Western Australia, one must first go to your regular GP and obtain a referral to a paediatrician. This in itself can pose an issue as not all GP’s are familiar with ASD and how the traits can be presented. Some people have found a lot of resistance from GP's to complete a referral, it is generally not the first line of management from their point of view. Many GP's will suggest that the child be seen by a psychologist or that the parents attend various parenting courses that are often available in the community. Other GP's may suggest medication for children presenting with anxiety.

The first piece of advice that I can offer, is to be an advocate for your child from the get go. The sooner that you obtain a diagnosis, the sooner your child can participate in much needed therapy.

One you have the referral in your hot little hand and you've contacted your paediatrician of choice, you will often be placed on a wait list. This could be for weeks or months even. Pediatricians in Western Australia are in hot demand and quite a few are being very selective or not taking on new patients unless there are serious concerns about the child. We were incredibly fortunate with L in that he was already a patient of our paediatrician. When I rang to make the appointment for O, the receptionist advised me to jot down all of the concerns that we had about O and attach it to the referral. This was so that the paediatrician could make a decision on whether he would see O based on all of this information and to ascertain if enough of the criteria are met to warrant being referred onto a speech therapist and psychologist. Luckily (or unluckily depending on how you look at it) both O and L met the criteria in the DSM-5 for the paediatrician to make a provisional diagnosis.

My next piece of advice is if you are wanting to go through private health system for an ASD diagnosis, provide your paediatrician with as much written evidence as possible to put with the GP referral as  this will quite often assist the paediatrician to determine whether or not to take on your child.

In Western Australia, a child under the age of 12 years must receive three separate diagnosis – paediatrician, speech and psychologist – and all three must be agree with each other. If one of the specialists disagrees, an ASD diagnosis will not be made.

With L our paediatrician referred him to Intervention Services Autism and Developmental Delay or ISADD. ISADD is basically a one stop shop and have access to speech therapists and psychologists, however they are very expensive. As well as assessments, ISADD can also provide therapy, advice and support.

With O our paediatrician referred her to the Child Development Centre in our local area to see a speech therapist. O was already under the care of a child psychologist so that covered one specialist.

From gaining the referral to the initial appointments, the time period was around 6 months but that was obviously through the private system.

When O was in Kindy she was referred through the public system for her speech issues which at the time were unrelated to ASD. Her Kindy teacher completed the referral and it was processed through one of the local Child Development Centre.

This referral and subsequent appointments were free as it was through the public system, however the wait lists in the public health system are ridiculous. A friend of mine is currently in the ASD process through the public system and it has been over a year since the referral was done. They are still waiting for a paediatrician appointment. A referral done through the school system is processed through the closest Child Development Centre to the child's school. Once the referral has been processed the child is then put into the system to whichever centre has a place available.

I have been told that the wait list can depend on how much information is in the referral – the more information that is in the referral means potentially a shorter wait list time. O’s referral was put processed in term 1 of Kindy, we received the letter of confirmation term 3 of Kindy and we received her first appointment in Term 1 of Pre-Primary. That was purely for a speech issue and it took just over 12 months.

One of the positives about doing it this way is that once the child is in the public system, they will not be discharged from the service until the issue has been diagnosed or the child has made significant progress. O was in the public system with her speech for a good 18 months after her first appointment.

If you do decide to go ahead with the diagnosis process, the third piece of advice that I have is try to NOT prepare your child for the appointments whether they go private or public.

This sounds dreadful but it is honestly best for the specialists to see your child as they would appear day to day with their typical behaviours, their stims, meltdowns, anxiety and so on. I know of several families who prepared their children beforehand so that child knew what to expect. In doing this, by the time they got to the appointment the children were so familiar with the environment that they made eye contact, they stopped stimming because they weren't as anxious about the specialist visits and they were subsequently talking to the therapists. So while the children met most of the ASD diagnosis criteria, the specialists decided that because the children made eye contact and were sociable they could not have ASD.

It is incredibly distressing, but the more your child is acting naturally, the more challenging behaviour the specialists are able to view and document.

The final piece of advice that I have is prior to the assessment process we wrote down every little piece of information that we could remember dating back to birth. All the odd behaviours, all the missed milestones, sleep issues, obsessions, the sensory sensitivities, the repetitive behaviours and so on so that when it came time to answering questions, nothing would be missed. This was incredibly useful as we were able to keep focused on the questions rather than dwell on the apparent negativity.

The questions that are asked during the assessment process can be quite personal, they cause you to take a closer look at your child, they can point out  and focus on the negative behaviours that your child exhibits and at times they can cause you to question your own behaviours. Having all the information in front of you to refer to means that there is a lower chance of you missing any vital information.

The ASD diagnosis process is very lengthy and extremely draining, both emotionally and mentally for the child but also for the child's family. While you are on the diagnosis journey it is important to keep the end goal in sight and in the back of your mind. Keep reminding yourself that you embarked on the process to ultimately gain assistance for your child. This is what has kept us going for both O and L. While the process is draining, the end goal is rewarding.

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I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx