Other signs of ASD/ADHD

[NoFrills01]

I'm really feeling low today with worry and exhaustion from not knowing what to do and who to talk to, and where to get help.

We are lucky to be in the loop within the NHS to have our child assessed for adhd, and be under a psychiatrist. (Child had sudden onset of tic disorder/absent seuizers after infection when they turned 5) child is also under a neurologist with suspected autoimmune encephalitis.

When child has infection child's behaviour and mood changes. Were talking to the extreme, both physically and mentally unwell. Child struggles to fight the infection and it always ends up with a hospital stay, blood tests, scans ect, dash to a&e via ambulance its so stressful. Last time I went 50 hours with no sleep staying awake as child was so ill in hospital. It has knocked my own health and mental health as soon as I see child is unwell I know whats coming and I'm so afraid. Child eventually recovers physically but mentally tics, and behaviour last weeks and weeks.

Aside from this its been discussed many times about child having adhd/asd brought up by neurologist having been with child.

Our assessment contradicted the school's, psychologist suggested repating and getting an independent assessment.

School see no adhd/asd signs, however child is also not where they should be academically either.

I believe child masks at school, child is now 6 and has more and more sensory issues, lights, sounds, wiping bottom. Terrible sleeper, tantrums, has to have everything in their mouth, walks around and around in circles, hand flaps during tantrums, cries and is upset often, and will talk like a baby and wants to play as a baby nearly everyday. Child finds parties hard, or social situations and often walks away and sits alone feeling upset. Child cries often at school.

I just don't know what to do, I feel with all my soul something is off but were not getting anywhere fast its been well over a year and a half. School just don't seem interested in supporting.

What to I try next?

Independent assessment seems a good idea, to understand more and get help sooner.

Sorry the school isn’t supporting, that is really not helpful given the need for early intervention and you being so proactive.

It's not for school go diagnose or not. You need an assessment. It took over 2 years for my DD to be assessed through NHS channels so perhaps private sounds best if you can afford it.

Please don't ignore your gut feeling. I did as professionals and family told me I was neurotic ds finally diagnosed (privately) at 15, I raised concerns when he was 3 we could have avoided so much pain. I wish I trusted my gut feelings Instead I doubted my own ability as a mother. Best of luck

I’m not saying this is instead of asd/adhd but have you read up on PANDAS. The way the tics seem to come on after illness suggests it’s worth investigating

aspire.care/families-parents-caregivers/autism-and-pans-pandas/

Are you thinking they need ehcp for school? You could probably get one under medical grounds.

Up to the point where the child had first infection were they neuro typical?

sorry to pry but what type of infection causes this extreme reaction?

My son masks hugely at school so I sympathise. Been going through the system for over 5 years. It’s an absolute shitshow.

OP my dd has recently been diagnosed with ASD. She masked at school very well until it all started to unravel the last few years of primary.
She also had a link with infection. I was convinced it was PANDAS for a very long time. But now I just think that she was feeling unwell and it was the final straw in terms of coping and it made her overwhelmed and her behaviour hit the extreme.

She is a bit older than your ds. She's 13. Still have a tough time but she is much easier to cope with. Partly because others have changed how they are with her.

Do you know how long you need to wait for a camhs assessment for ASD? If you're not on the pathway, I'd get on it asap. It took over 3 years from the first referral til diagnosis. That's also after multiple referrals from 2 schools and GP. We got to crisis point and they agreed to a phone appt but still didn't bring the diagnosis forward. So definitely start the ball rolling.

Does anyone know what the responsibility of the school is if a child shows signs of ASD, but is not diagnosed?

a Young relative shows strong signs (anxiety, stims, problems with peers, ahead in subjects that interest them but struggling with others). They were moved from a State primary that did flag issues to a public school. The public school seems to drop hints, but not actually make a recommendation. Trying to raise it with the parents is v difficult. It feels like there is a dereliction of duty from the school.

My child has just been diagnosed with ASD at 6. The whole process was managed by the school, all assessments and referalls were instigated by the SEN lead. Now that I have a diagnosis we have been discharged from the umbrella pathway, no additional support has been recommended or suggested. When I queried this I was told for anything physical I should go to the Dr's, anything else the school SEN. It's a minefield and I feel really unsupported and that's with a diagnosis. I totally feel your frustration. I can only suggest you contact the school SEN, your GP, go private if at all possible. In my very limited experience you have to bang on all the doors. Best of luck to you and your child.