Hello Everyone

[lettingoffsteam]

Hi I'm Lorraine and mum to three fabulous children aged 29, 27 and 21.My eldest, Jake has recently undertaken an assessment for autism, something I wondered about since childhood but didn't action as he functions well .Anyway I had to do a one hour open interview about childhood.Now I've been asked to do a two hour questionnaire with a more qualified person.Jake has done three assessments so far. What is your experience of this process and what happened next?

[Bee-bop]

Hi there,I believe it's different in different localities and depends on age at time of assessment too so, no two peoples experience will be the same. I have two children who went for testing one was 12/13 and the process took 3 years with initial questionnaire at CAMHS, larger questionnaire at home, educational psychologist assessment, speech and language therapist assessment, observation at school and then an interview that took a good few hours. End result a diagnosis for ASD. Second child's assessment was last year at age 25/26. Online questionnaire from the Dr's then a larger questionnaire from the service but, also questionnaire for adhd. Appointment for assessment in which the specialist told us there and then they believed it was not autism but Dyspraxia, Dyslexia and Dyscalculia and gave us a fact sheet that fit more with their difficulties. The overlaps were: sensory issues with sound, vision, textures, getting overwhelmed and going non verbal, struggling with social cues. This process was within a few months and we didn't go on to the further tests as they were deemed not to have asd at this assessment.

I would guess that as you have both done a lot of gathering evidence so far and that you have an appointment for a more in depth questionnaire that you are probably closer to a diagnosis. I hope that the result is helpful for you both as he process demands a lot of time and energy.

[lettingoffsteam in reply to Bee-bop]

Hi Bee-bop, sorry for the delay in replying.It sounds like the whole process is more arduous than we had thought.Jake lives in mid Wales and we're in Surrey so different NHS rules apply probably. He had been told that they would speak to me but we got the impression it was only once . Mind you it could be that the first interview was a more general impression as it was a free interview whilst I've been told that this upcoming one is using specific questions and requires specialist training to administer.

[Bee-bop in reply to lettingoffsteam]

Hi Lorraine, Yes, it could be very different if in Wales. Two of my children went to University there and even though it is still the NHS, England, Scotland and Wales have different systems and don't line up with each other. One of my children went from Wales to Scotland to live and then back here to find there are no electronic notes for some of their treatment while there.

It sounds like the process in Wales is more rigorous and I would guess that they have enough information to believe that further questions are needed. Hopefully there will be an outcome shortly.

[lettingoffsteam in reply to Bee-bop]

Hi Bee-bop, I hope that this is the last interview as Jake wants results.Would you say diagnosis in an adult is beneficial in your experience?

[Bee-bop in reply to lettingoffsteam]

Hi Lorraine,

I think diagnosis at any age can be useful as then reasonable adjustments can be introduced and this can be really beneficial but, I know one adult who doesn't disclose they are autistic anymore and my recently diagnosed friend's son (10) who refuses the diagnosis. I know of another person that because their college didn't update the system when they changed courses, lost their classroom support and reasonable adjustments and when they had a meltdown was escorted from the premises. They felt disempowered to challenge this and if their EHCP had been followed, this would not have happened which is a system failure not theirs. My own daughter just wanted to know "what it is" she knew she was struggling and wanted to know why. She uses it as a way to understand herself.

My youngest, even though they had classroom support at college, wouldn't tell others that she was autistic because the term was used as an insult and when she told tutors (which took a lot for them to do) it was pretty much ignored as were the other inappropriate things this group of teens were saying. So, I would say we don't live in a fully integrated and accepting society and for myself, social change needs to be implemented for us all to thrive.

[lettingoffsteam in reply to Bee-bop]

I see, so lots of reasons.I think Jake just wants to know.My daughter has some traits and scores highly on the DIY tests but says that knowing wouldn't change anything for her.So all different.

[Bee-bop in reply to lettingoffsteam]

Definitely all different. I found my middle child's assessment coming back as Dyspraxia interesting as we knew she had this in aspects of struggling with 'clumsiness' etc but, I really thought it was a physical issue and to find out that there are mental differences too was a revelation to us both but, it makes total sense now! It has been very helpful to them knowing that too.

[lettingoffsteam in reply to Bee-bop]

Yes I wouldn't have known that either.

[Bee-bop in reply to lettingoffsteam]

It was really interesting to find out as it goes much deeper than spatial awareness. I am curious if this is something within your family too- do you and/or your children have hyper mobility? There's a link between neuro diversity and hyper mobility I read.

[FredaN]

My situation was a little different to most, as my autism assessment came about as a result of an NHS complaint I'd made about mental health services. The person investigating the complaint used to work in the Asperger service and he must have picked up on something because I hadn't considered it at all before then. The investigation into the complaint took months, but one of the outcomes was a referral for autism assessment.

The assessor spent an hour or two with my parents and I had an assessment which was also about 2 hours long. They already had some info from other specialists to work with, but I think I was diagnosed about a month after my assessment. I don't know if it was just very obvious in me or they normally diagnose people in the same timeframe!

[lettingoffsteam in reply to FredaN]

Hi FredaN, that was the kind of pattern that Jake has been told would happen so he was surprised I was having a second interview.Have you found your diagnosis beneficial at all?

[FredaN in reply to lettingoffsteam]

It sounds like maybe they're being more thorough, which isn't a bad thing! I know they have to make sure enough symptoms are present from birth to rule out other things. Also, undiagnosed adults will have developed coping strategies and masking (trying to appear more "normal"), so it's getting past those to see if there is autism beneath, if that makes sense. I suspect the fact I had a long history of depression, an eating disorder, OCD, sensory issues, struggled with school & to stay in employment and very intense "special interests" from a fairly early age were all red flags that made it easier for them to diagnose me.

It has been helpful in some ways, but not really changed much on a practical level. I can understand why I can't do certain things others find easy and find many things difficult, which I guess is a relief, but it's still frustrating I can't do them. I wish the sensory issues could be treated more too. The medication I take for ADHD has helped make my eating a bit less chaotic and that's made more of a difference.

[lettingoffsteam in reply to FredaN]

I'm glad that the medication has helped your ADHD.My other son was diagnosed with that at 17 but he didn't get on with medication at all.He finds that going to the gym, running and cycling work well for him.