Diagnosis Part Three
Part Three - Private ASD diagnosis
Over the next few months I talked more and more about the possibility of private diagnosis for Z - paying a clinic rather than waiting to go through CAMHS. I started looking into it and how we go about it and more importantly, could we afford it? I heard mixed views about getting a private diagnosis. Some professionals advised me that it might not be recognised by other services and that I still might have to go through CAMHS anyway, making paying a complete waste of money. I got in touch with a few clinics about the process and asked for price lists. Well, I was not prepared for those costs. I knew it would be a lot but almost £2k was not achievable for us. It looked like we’d carry on waiting.
While catching up with a friend one night I’d mentioned the CAMHS/private diagnosis dilemma, and she mentioned she knew of a clinic. It was a person she knew of through a work colleague and had been used by a family member too! This gave me a new hope. The details of the clinic were passed on to me and I contacted them as soon as I could. It was so simple. I was given a break down of costs, how many hours I was likely to be there, and what would happen at the first appointment and who would be there. So after talking it through with Daddy Z we went for it. The thought of not knowing and having Z start school without the right help and support was driving me mad and I just had to do whatever I could to get things moving.
So within 3 weeks of contacting the clinic, we were heading to the initial assessment appointment where we met the clinical psychologist. Once again we gave all our details, family history, pregnancy and birth history and all the information we had about Z. She was great, full of information and understanding, we felt at ease and even Z was happy enough to be there. After the first appointment we had to go home and fill in ‘Social Responsiveness Scale’ - a questionnaire for home and one for nursery to fill in, along with an educational report. We were then given a second appointment just two weeks later.
We had to travel around an hour each way to reach the clinic so they suggested to us that they’d be happy to do the ADOS (Autism Diagnostic Observation Schedule) and then follow that immediately with the review. So that would be it. Just a few weeks and we could have a diagnosis.
I was pretty nervous about the ADOS but I think I mostly felt eager to get through it and know where we stood. Diagnosis day arrived and all of the paperwork had been received and reviewed by the clinical psychologist and child psychiatrist. We were both allowed into the room providing we didn’t interfere in the observation. We were instructed that if Z wanted to involve us, to just point him back to the play area. So we went in, and sat quietly out of the way. There were toys laid out on the floor and Z headed straight for them. We watched as he played really well with the psychiatrist while the psychologist was busy taking notes on the play. It lasted about an hour as Z was shown different toys and given different choices to make. When we came out to wait for the review, Daddy Z said how well he had played. We were instantly worried that they got too good of a show from Z. That he’d played so well they wouldn’t know how it could be the rest of the time.
After a short while we were called back in for the review. We’d worried for no reason. They explained how they had observed Z, how he struggled to make any eye contact, he showed the preference for repetitive play and was uneasy about moving onto the next stage of play, struggled to make choices, was seeking sensory experience, flapping his hands when excited etc. He had a diagnosis, this is what we’d been waiting for.
I didn’t feel sad, I didn’t cry, I’d already realised that having an official diagnosis meant that we could get him help and support. Labelling him with ASD didn’t mean anything about him changed. He was always our little boy with or without diagnosis. We get through the meltdowns and the hard times and even when it’s really, really tough we will always find our way. But now we have something to write down, something that means professionals will listen.
We haven’t had any problem with going through a private diagnosis, nobody as yet has said it wouldn’t be accepted. After our latest paediatric appointment the doctor said what a thorough report it was. So for us paying to go private was well worth it. From first contacting the clinic to receiving the final report was less than two months. But it had taken from our first paediatric appointment in August 2018 to August 2019 to get to this point (not to mention the year or so before that of worrying).
So within 3 weeks of contacting the clinic, we were heading to the initial assessment appointment where we met the clinical psychologist. Once again we gave all our details, family history, pregnancy and birth history and all the information we had about Z. She was great, full of information and understanding, we felt at ease and even Z was happy enough to be there. After the first appointment we had to go home and fill in ‘Social Responsiveness Scale’ - a questionnaire for home and one for nursery to fill in, along with an educational report. We were then given a second appointment just two weeks later.
We had to travel around an hour each way to reach the clinic so they suggested to us that they’d be happy to do the ADOS (Autism Diagnostic Observation Schedule) and then follow that immediately with the review. So that would be it. Just a few weeks and we could have a diagnosis.
I was pretty nervous about the ADOS but I think I mostly felt eager to get through it and know where we stood. Diagnosis day arrived and all of the paperwork had been received and reviewed by the clinical psychologist and child psychiatrist. We were both allowed into the room providing we didn’t interfere in the observation. We were instructed that if Z wanted to involve us, to just point him back to the play area. So we went in, and sat quietly out of the way. There were toys laid out on the floor and Z headed straight for them. We watched as he played really well with the psychiatrist while the psychologist was busy taking notes on the play. It lasted about an hour as Z was shown different toys and given different choices to make. When we came out to wait for the review, Daddy Z said how well he had played. We were instantly worried that they got too good of a show from Z. That he’d played so well they wouldn’t know how it could be the rest of the time.
After a short while we were called back in for the review. We’d worried for no reason. They explained how they had observed Z, how he struggled to make any eye contact, he showed the preference for repetitive play and was uneasy about moving onto the next stage of play, struggled to make choices, was seeking sensory experience, flapping his hands when excited etc. He had a diagnosis, this is what we’d been waiting for.
I didn’t feel sad, I didn’t cry, I’d already realised that having an official diagnosis meant that we could get him help and support. Labelling him with ASD didn’t mean anything about him changed. He was always our little boy with or without diagnosis. We get through the meltdowns and the hard times and even when it’s really, really tough we will always find our way. But now we have something to write down, something that means professionals will listen.
We haven’t had any problem with going through a private diagnosis, nobody as yet has said it wouldn’t be accepted. After our latest paediatric appointment the doctor said what a thorough report it was. So for us paying to go private was well worth it. From first contacting the clinic to receiving the final report was less than two months. But it had taken from our first paediatric appointment in August 2018 to August 2019 to get to this point (not to mention the year or so before that of worrying).
I know private isn’t possible for everyone, but if it is feasible for you, after our experience I would definitely recommend it. Now we’re on our way to getting Z the support he needs at home, nursery and onto school.
Sarah X
Sarah X
I just wanted to say thank you to Rebecca and Rachael for your recommendation. If it wasn’t for you we might not be at this point.
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