I’m new here... my daughter is 3 year old and looks like she has HFA

 Hi all,

Sooo long story short we have had a long fight for our daughter  she is now 3 years 4 months, she has presented with bevourial problems since she was a baby...... absence episodes although they have pretty much ruled out epilepsy, these episodes can last anywhere from a few seconds to a couple of hours ( the longer ones she presents as if she is in coma noted to have a GCS of 4-6 unresponsive to any pain and unable to wake with pin *** pupils) her first prolonged episode was at 4 months of age and have continued from then to now, the shorter episodes present as absence epilepsy but EEGs say different so we have been told they could be sensory, Ava was around 18 weeks when she first smiled, over a year before we had any laughs or babbling and was around 2 and half before she could put two words together, from around 3 she has almost a full vocabulary if not higher than the average 3 year old, she appears to live in her own little bubble multiple personalities, and more than a few traits such as her own specific space, routine, sensory processing to name a few........

We have now seen a new doctor who feels she appears to have High fundtioning Autism and has referred to CAMHS we have been told he waiting list is over 1 year to be seen and that it could be a hard battle to get a diagnosis as she is a girl...... from the reading up I have done I can see it is very different and I am now even more confused!

Does anyone else have a girl with autism who go a successful diagnosis at a young age??

Parents

  • Hi NAS37070,

    Welcome to the NAS Community Forum. :-)

    In terms of getting a female specific Autism Diagnosis, maybe get in touch with the NAS Helpline people, who provide confidential expert advice and support on autism for autistic people, their families and friends. The telephone number is: 0808 800 4104 ~ with the opening hours being between: Mondays to Thursdays from 10am to 4pm, and Fridays from 9am to 3pm (excluding Bank holidays).

    In terms of:


    Sooo long story short we have had a long fight for our daughter  she is now 3 years 4 months, she has presented with bevourial problems since she was a baby...... absence episodes although they have pretty much ruled out epilepsy, these episodes can last anywhere from a few seconds to a couple of hours ( the longer ones she presents as if she is in coma noted to have a GCS of 4-6 unresponsive to any pain and unable to wake with pin *** pupils) her first prolonged episode was at 4 months of age and have continued from then to now, the shorter episodes present as absence epilepsy but EEGs say different so we have been told they could be sensory, Ava was around 18 weeks when she first smiled, over a year before we had any laughs or babbling and was around 2 and half before she could put two words together, from around 3 she has almost a full vocabulary if not higher than the average 3 year old, she appears to live in her own little bubble multiple personalities, and more than a few traits such as her own specific space, routine, sensory processing to name a few........

    My experience of having Aspergers Syndrome is in developmental terms just as you describe your daughter's experience, only of course from within. I had the EEG and MRI scan for Epilepsy, which left what is referred to as.


    Psychogenic nonepileptic seizures as a manifestation of psychological seizures as a manifestation of psychological distress associated with autistic spectrum disorder

    Abstract

    Psychogenic nonepileptic seizures (PNES) are observable changes in behavior or consciousness that are similar to epileptic seizures but are not associated with electrophysiologic changes. PNES occur in children with underlying psychological distress and are especially frequent in those with epilepsy. Because PNES are heterogeneous, comprehensive treatment tailored to each patient is required to reduce psychosocial stress. Currently, reports regarding children with PNES concomitant with autism spectrum disorder (ASD) do not exist, and effective treatment strategies for these children are lacking. In this case report, we describe a 10-year-old Japanese girl with undiagnosed ASD who developed PNES while undergoing treatment for benign childhood epilepsy with centrotemporal spikes. She exhibited hypersensitivity to sound and interpersonal conflicts caused by social communication deficits. The PNES symptoms improved shortly after our intervention, which was designed to reduce her distress caused by auditory hypersensitivity and impaired social communication, both characteristics of ASD. To the best of our knowledge, this is the first report describing PNES in a child with ASD. Our findings suggest that PNES can result from psychological distress in children with undiagnosed ASD and highlight the importance of examining ASD traits in patients with PNES.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4723019/


    If any of that helps?



  • Hey, wondering if you were ever aware of seizures becoming worse with pain? Mainly internal pain?

    That can be one of the "many" reasons yes, as any build ups or excesses of stress, tension or excitation can or in fact do bring seizures on.

    Are you aware or has your daughter made you aware that she is in pain?

    Or are you trying to establish more what causes the seizures themselves?



  • She doesn’t always let us know she is in pain but generally before a infection or virus reaches its peak she will have multiple absences in a day as many as 40, and what may be a common cold to most will have her bed bound..... yet with external pain bumps scraps bruising etc there is generally no reaction unless someone else reacts first then she obsessed over it but still feels no pain in the area that we know of......

    Basically the mind-body relationship is much like a radio or television set, and the character of information that gets sensibly received and transmitted ~ depends on which channels of experience are involved, or not.

    In terms of not feeling external knocks, bruising and so fourth, it would seem that your daughter's physiological sense of pain was overloaded, and numbed out from her sensory perception range. This is generally referred to as a Sensory Processing Disorder (SPD) as involves senses being anything from too acute (hyper-sensitive) or no sense at all (hypo-sensitivity).

    Here are few links that you might find useful perhaps:


    Sensory Difficulties - NAS - The National Autistic Association

    http://www.autism.org.uk/sensory



    Sensory Hyper- and Hypo-sensitivity in Autism

    ttp://integratedtreatmentservices.co.uk/blog/sensory-hyper-hyposensitivity-autism/


    and


    Pain Sensitivity and Observer Perception of Pain in Individuals with Autistic Spectrum Disorder

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3697411/


    Also, regarding the amount of stress that causes the seizures, the following info might also prove useful:


    Meltdown and shutdown in people with autism

    https://autism-connect.org.uk/upload/pdf_files/1469104651_Meltdown_shutdown.pdf


    From the Inside Out: An Autistic Shutdown

    https://everydayaspie.wordpress.com/2017/02/05/574/


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