I’m sorry if this is a bit long-winded but I’m really struggling at the minute. My 17 year old son is currently going through assessment for ASD. His community paediatrician has changed from the one who started the process and we met for the first time yesterday. In the 25 minute appointment he told me that they don’t diagnose Aspergers anymore, but that in order to have a diagnosis of ASD, there needs to be a learning disability and language issues. He is aware that Liam doesn't have any delay or difficulties with language and in fact usess more complictaed and adult language than his peers. He asked nothing about my sons childhood, except to say he assumed Liam had been invited to birthday parties and sleepovers as a child. I told him that actually he has never been invited to a party or to a friend’s house, he’s never had a friend. He just waved his hand at me.
He asked me what Liam’s hobbies are, and I said that he likes to play on his Xbox. He asked me if I police his use on it. I said I used to, but he’s 17, and I don’t time him on it or police his bedtime anymore. As soon as I said this, he told me Liam has social anxieties due to video games- I said that he had only had the Xbox since June last year, not through his childhood but he said that didn’t matter. I told him that Liam has been allowed to play on a gaming console since he started secondary school, but he had to play on it in the front room and was only allowed for an hour on a Saturday and the same on a Sunday and only if his homework was finished.
Liam fixates on one subject and while the subject changes every few years, it is a complete obsession for him. He can’t have a conversation- rather he lectures about his topic for hours on end, but the dr said this was normal childhood obsession!! Simply because if it was autism then he would have exactly the same obsession at 17 that he had at 5! I’ve got 4 kids and I know that Liam isn’t displaying a normal childhood obsession!!
He told me that Liam having absolutely no social awareness is because I didn’t stimulate him properly when he was younger, despite not asking anything about when he was a child. I said I have tried to take him to youth clubs, St. John’s ambulance, after school clubs and beavers, but everything I said the Dr brought back to how he plays on the Xbox and it all stems from there.
He didn’t actually speak to Liam during the appointment.
Liam literally ticks every box on symptoms for aspergers but without a diagnosis then his college cannot put support in place for him. His primary and secondary schools both had IEPs in place and understood that Liam had high functioning autism but the college requires a diagnosis.
I’m at a complete loss what to do next. Where do we go from here? How can I possibly support him through college and into work when the professionals won’t listen to us? Sorry for the long post- I just wanted to moan to someone who might understand!
Putting it bluntly the paediatrician is wrong - you do not have to have a learning disability or language issues to be diagnosed with ASD. I was diagnosed with ASD/ASC (I prefer condition to disorder) on the NHS about two years ago and do not have either. Alternatively and quite possibly the local clinical commissioning group will only pay for a diagnosis if you have either. Unfortunately Diagnosis on the NHS can be a bit of a postcode lottery.
I would try phoning the NAS helpline who should be able to advise you what you can do next. I don't know the number but you should be able to find it on the website easily enough.
I agree with Taltunes that it might be useful to talk to the NAS helpline who might be able to help you with next steps.
You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
Please see the following link for further information:
In the meantime you might find it helpful to draw your paediatrician's attention to the NAS website page on the the range of autism profiles and criteria for assessment: http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx
In addition you might find the following link helpful to get appropriate support in place in his current setting: http://www.autism.org.uk/services/helplines/education-rights/legal.aspx , this shows that advice for people in further or higher education can be found from the Disability Rights UK’s Disabled Student Helpline on 0800 328 5050 or visit the Disability Rights UK website.
I hope that you find some helpful advice.
Heather - Mod
So sad to hear that your son has lived a life without support and that in 2018 parents are still being blamed and assumptions being made. Having an asd son has given me more experience than a book could and again and again parents are not being believed and blamed. Im a counsellor and work with trauma, but im an expert on my son! Parents have a huge understanding of these things and im most effective working with asd clients, because of my mum experience, not text book. I wander if you could ask for a second opinion or different doctor? Your note alone lots are accused sadly, it causes so much upset and suffering to familys x
I agree. You don't need to have learning disabilities or language difficulties for an ASD diagnosis. The three criteria belonging to the "triad of impairments" required for a diagnosis are communication, social interaction, and social imagination.