Autism diagnosis age and method?

[towardsexperience]

So this is long winded. I have a DD whos 5 and twins DDs who turn 3 in April, born prem by 8 weeks. One went through 6 weeks in the nicu the other 10 weeks, coming home on O2.
The following months we were aware of developmental delays but by about 9 months, things were odd, different and their behaviour I brought up to the doctor. This happened every 6 months (I even brought up autism because I have experience with SN children) till they were at their 2 yr assessment (supposed to have evened out developmentally by then) and were both assessed with developmental ages under 1.

It was only at the 2 yr review that the consultant we have been seeing since they were prem started to see my comments about Autism. It felt like we finally had recognition for my neurodivergent toddlers. My DD 5 is very neurotypical, though shows traits of ASD.

The consultant called me the day after apologising for missing the mark but for me to know he is doing everything he can and they were referred for many things (physio, OT, hearing, SALT, community peds, and a couple others)

I have routinely asked if they would have early referral to the autism pathway, and they all seem to glass over and tell me they are going through and obscure way to getting a diagnosis. Which relies on SALT assessment, which will apparently go in the autism side door and get assessed sooner?? We have had all referrals but salt, and have recently been told we are still 13 and 14 on the waiting list. I am still chasing this.

We were pushed up the GDA community peds list and she approved portage nursery (not allowed home portage) and early skills nursery through the hospital. She was content with my use of calling the girls autistic and confirmed that verbally. However still did not send them to the autism pathway and early referral or being referred at 3 "makes no difference" in wait times etc. We have another appointment with her in april...

Something feels so off about this whole process. It is so stagnant and we are We feel there is a difference in the typical process verses our process, and we have missed opportunities for learning as parents for the best way to manage and regulate the girls.

So, I'm asking.. What age did your children get ASD diagnosis? How long did that take? How did that happen? Did you go through the process via CAMHS? SALT?

Any help would be incredibly useful, cause I feel broken and exhausted. We both do. There has to be an easier way without feeling forgotten by the health system?

The diagnostic process varies area to area.

Have you applied for EHCNAs?

No, I was told that if I applied now, we would be denied as theres not enough evidence from the nursery they attend on a monday and would have to wait till in mainstream nursery.

Who told you that? You have enough evidence to meet the relatively low threshold for EHCNAs. I would apply yourself. It may be refused, lots are however much evidence there is, but if it is you should appeal as the vast majority of appeals are upheld.

My DD was diagnosed aged 4 just before Xmas, she was referred for her autism assessment when she was 2.5 by Community Paediatrician. My DS was diagnosed this week he’s 2.5. He’s been under the community team since he was 1 due to him unable to sit up on his own. Since the age of 1 he’s seen numerous professional Physio, OT, SALT and a neurologist and all they mentioned autism. We had his review with his paediatrician at the end of December. She mentioned then she would be referring him for an autism assessment but he would avoid the long wait because she was part of the team who do the autism assessments and she believed she had enough evidence to assess him as soon as she could. We had a lady out from SALT at end of January to get an update on how he’s is as they seen them previously when he was unable to sit up. She mentioned she is also part of the autism assessment team and was out so her and his paediatrician could get him booked in for his assessment. So a few weeks later we received his appointments. We took him last week and he was diagnosed at end of the appointment. He’s not at nursery but he’s under the early learning support team to try get him in a ASL nursery.

I have heard it from across the board from their nursery, the school thats accepted them in September for nursery etc. I will maybe just get started on it and push ahead.

I really appreciate you taking the time to write all that. It sounds like we are on a similar path to your son. Though SALT is taking so much longer than they anticipated. The community ped and salt therapists are apparently a part of our autism assessment team at our hospital also. So I just pray that the SALT comes back soon. We are currently reading and watching everything we can to support the girls, but my husband is feeling like it is just dragging on getting them officially diagnosed! cause it truly takes so long! xx

Just apply yourself now. Don’t listen to what schools and LAs tell you about EHCPs. They will tell you what they what you to know and their version of the law. Unfortunately they often tell parents their DC won’t get or don’t need an EHCP but parents go on to successfully apply themselves.

It took over a year for my DD to get Speech and language therapy after she was accepted on to the waiting list. With my son it was different as when he was about one they came out to assess his eating due to him not being able to sit up on his own. When she came out at end of January she confirmed then she wouldn’t accept him on to their waiting list yet for therapy. He really doesn’t engage with anyone so just now there is very little they can do for him. Her visit was more so they had a SALT report to go towards his assessment.

DS was diagnosed just before 5, referral went in to pediatrician at 3.5 who referred him over to assessment pathway at about 4.5, after seeing evidence from nursery and SaLT.

I asked for a referral for DD just after she turned 3. She's 3.5 now and we've just had a pediatrician appointment to discuss our & nursery's concerns. Pediatrician is happy to move her to diagnosis pathway, but can't until she's been seen by SaLT, which is a 6-8 month wait in our area. Hopefully SaLT will observe her in nursery next autumn, followed by assessment which should be done by about this time next year.