Chopstick

by Chopstick
(England )

Hello 😊

Mum with 13 year old home-schooled son in South East Surrey who has Tactile Defensiveness (clothing & weather) seeking friends & support:- email: chopstick1965@gmail.com

I feel in constant battle in a fight to get SPD recognised as a proper stand-alone condition and not so freely labelled & lumped into the autistic spectrum pot.

The University of California, San Francisco has several interesting articles online and here is just one FYI:-

https://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders--kidsi

We’ve personally been on an incredibly painful journey with our beautiful son. I couldn’t begin to tell you our story but we’ve home educated for 4 years as a result of the ignorance present in this country (UK) concerning SPD related issues. Schools, the local authority (social services Argh 😤😡😤!).... doctors, paediatricians, psychologists, psychiatrists, even some of our family!!....the specialist(??) OT that consulted was also fairly unhelpful (financially as well as emotionally).

My son’s difficulties specifically relate to tactile defensiveness, clothing and temperature (the weather), and I would welcome a conversation with anyone else coping with a similar situation. Particularly for children who present with no other obvious developmental delays, have no behaviour issues, and appear otherwise apparently normal to the outside world. Our son in fact probably has a ‘higher learning potential’ but has been hampered (understatement) by the disabilities of his SPD, or should I say more due to the lack of understanding and inexperience shown by schools, the local authority, and people generally.

It would be a monumental breakthrough to see the UK gain a better understanding - as is the case clearly in the US. There is little or no

support here in the UK and the majority of therapists & clinicians operating in any of the related fields are evidently not trained or focused on the new research that is clearly emerging, resulting (in our case) with unhelpful misdiagnoses of high functioning autism, Asperger or ASD which categorically do not reasonably fit.

The sad truth is that while SPD is not included as a stand-alone condition within the 13 disabilities noted within the DSM (Diagnostic and Statistical Manual of Mental Disorders) a child in the UK will not be considered eligible for special needs services. As visiting home tutors are our only pathway for our son’s specific learning ability we are currently paying £50k(+) annually with no support or funding available. On top of the physical and emotional challenges of this journey we are paying a high price financially. We are reluctant to seek outside support after the unhelpful attention from social services where we were described by the case worker as easily manipulated parents by a school refuser presenting with no anxiety whatsoever. The medical evidence and diagnoses (HFA/ASD/SPD and anxiety) provided were ignored. The case was quickly closed after we formally complained to the social worker’s manager and a visit by our home education department rubber-stamped the case as no cause for safeguarding issue or concerns. Why should we have to label our son and fabricate artificial diagnoses when he has experienced enough difficulty in his life on the merit of his true disabilities; SPD tactile defensiveness, resulting in School Phobia, and Anxiety.

Just wanted to share a snapshot of our own sensory experiences and personal view 🤔.