Screening

AliCat74

HI all. This is my first time here. My son who is 23 has recievd a response from oxleas trust saying he does not meet the threshold for an autism diagnosis based on our initial assessment which was a questionnaire filled up by myself and my son. I am in complete disagreement with this decision and so is my boy. We and my daughter are 100% certain he has ASD and his life is being deeply impacted by his difficulties. Can anyone advise us on how to proceed and is this a common occurrence. Thanks in advance for your responses

Biblioklept

I'm so sorry @AliCat74!!

This makes me so angry as the screening is only meant to be a first filter not a definitive answer but leave people feeling ignored as they just get dumped off the list with no help or answers or support! Even if it was eventually determined your son isn't autistic, where is the support in finding out what his difficulties are down to?? Stupid system.

As more is understood about autism, more people are going for assessments and waiting lists are getting longer, and it seems like they only putting 'extreme' cases through to the next stages as a way of shortening the lists. Which completely ignores the impact not understanding yourself has on a person!

I don't know the process but it is your right to ask for a second opinion!

Biblioklept

One other point though, I was diagnosed as an adult and know how validating it felt and how it allowed me to fully truly understand myself BUT being diagnosed does not open other doors or support.

I'd think very hard about why he wants a diagnosis and what would or wouldnt change if he had one, so how hard you both want to fight for this.

It doesn't suddenly open different services, in fact it was very much a case of "okay you're autistic, see you later!" and nothing since. If your son is convinced he has autism, can he find a way to feel self-validated without a formal diagnosis? Sometimes just knowing it yourself can be enough.

Obviously it's crazy you have to fight at all and everyone deserves to understand and feel validated but it isn't always life changing ❤️

Holly_Scope

Hi @AliCat74 I'm so sorry to read this, that must be incredibly demoralising for you and your family. Am I right in thinking you've referred yourself by completing the questionnaire? Other than going private (which can be incredibly costly), I'd suggest initially going back to the trust and questioning this further, and speaking with your GP to understand if they can refer you.

If you're not happy with the lack of support, there are some other options here - What can I do if formal support is not offered or is not enough

rubin16

https://forum.scope.org.uk/discussion/comment/1096665#Comment_1096665

I found the opposite once being diagnosed, I was diagnosed when I was around 17/18 and ever since then had ongoing support. I had extra help at college, If I'm ever in hospital I always get my own private room, I had classes offered to me online that teaches what autism is (as I had no clue or heard of it before being diagnosed). When I was arrested for hacking once in my early 20's (Not ever charged or convicted), they dearrested me on the spot again and I just had to have an interview with my solicitor and appropriate adult. I didn't have to say anything and they took ages explaining every part slowly to me.

I have support workers who help me, social workers, str workers and a care coordinator, I have perminent supported accomodation which is funded through the council and NHS. I don't know if its becuase maybe I'm classed as more severe idk?? But I've always had ongoing support.

The downside to this is I'm never treated like an adult truly to the point sometimes people speak to me in a weird way like I've only just learned to speak or something. They… speak.. like.. this.. for.. example.. and legally I don't have control over my own care, like for example if I'm in hospital they can speak to my care team and veto my own decisions if its in my best interest.