ASD. What was your route to diagnosis?

[sunfleurs]

Following on from the "SALT says not autism" thread I am interested to know the differences in how these kids are being diagnosed. It seems to me that there should be a standard process in place in all areas but that does not seem to be the case at all.

For us this was how it happened:

Ds started at a bi-lingual nursery, after a few weeks his teacher asked if she could get a Paediatrician in to observe ds. She came and said we should have ds assessed for a socialisation disorder (terrified at this point.)

We decided to move nurseries in case the bi-lingual environment was complicating things (classic ostrich).
2nd Nursery said the same after a couple of weeks so I took him to GP. She referred to our local Child Development Team. Went for three appointments with Developmental Paed with various tests and observations, one appointment also attended by a Child Psychologist.

Recieved diagnosis 6 months after he was referred to Development Team

It was all very straightforward for us even though ds is high on the spectrum. It is clear from reading many of the posts on here that it not the case for everyone. I know many on here have had to work much harder for a diagnosis and still not got it. So what is your story?

[TotalChaos]

story of a lack of DX really. I have concerns about DS language at 2.3. Get fobbed off until he turned 3. Then he goes on waiting list - 8 months for first NHS SALT appointment, 13 months for joint clinic appointment with senior SALT, ed psych and community paed. After 1.5 hours of questions and them testing and observing DS at that appointment they conclude that he probably doesn't have ASD, but has language delay and subtle social communication difficulties.

[coppertop]

The HV finally took notice of my concerns about ds1 when he failed his 2yr development check. She referred him to the SALT.

The waiting time was around 6mths. The SALT put him on the list for therapy. She saw him again when he reached the top when he was 3yrs old and referred him to the Paed.

The Paed saw him 3 months later, agreed that ds1 was autistic and referred him for a multi-disciplinary assessment.

3 months after that ds1 was assessed by everyone over a period of 1 week. At the end of the week there was a big meeting and the dx was made official.

With ds2 it was much quicker. When he was around 18mths old the Early Years team spoke to the Paed about him (I asked them to do this). The Paed saw him 3 months later and agreed that ds2 was probably autistic and referred him for a full assessment.

The assessment was the same as for ds1. This time the dx was provisional because the Paed couldn't decide whether ds2 was 'different' because he was very bright or whether he was using his brightness to find ways around his ASD.

In the meantime he was given all the help that he would've had with a dx. A year later, when he was 3rs old, ds2 was officially dx'ed with AS.

[PeachyTheRiverParrettHarlot]

Ourtwo were well reported onn hree but will redo

DS1:

at birth obviously different, by two seen by GP for probable ADHD; whilst waiting in surgery he ahd created so much devastation that without knowing why we were there GP had filled in referral form by the time we got in there!

Seemed to lsoe a bit of that as he aged so didnt follow that up but became incredibly ahrd to aprent, I wont go into how hard, too distressing to remember those times.

At 4 referred at school request, Paed watched twenty minutes in office, tells us possibly asd but not curable so will discharge bye bye (!!)- severe school issues starting at this point

At 6 in a new school after move, we get referral locally as school problems now disastrous. paed puts assessment plan into practice: a sped up one as school falling apart and statement needed desparately. DS1 seen by SALT, OT, PT, Ed Psych, priovate appointment with BIBIC lasting 3 days for assessment atken into account, two further visits to Paed and a dx is given aged 6; 3 years on is clearly the right diagnosis as he fits the stereotype more every day and his additional issues are easier to separate down.



DS3- nothing obvious at birth, easy baby but tehn so was ds2. talking quite well at 2.5, lost it all just before he was 3. Failed HV checks but HV said 'its obvious he could do it if he wanted'- alter find out she started furious letter writing that day but go no response to pleas for help for ds3. We were just getting ds1's dx and we didnt see it (terrible aprents ) so it was the school nursery that alerted us at 6.5, though by then we realised he did need a lot of extra help- thought it was due to being a late July baby. At first appt paed told us probably asd, but due to langauge issues he was assessed regualrly (SALT weekly) over 2 y4ears in which time an verbal dx was given twice but removed due to is it asd or sld concerns: SALT refused to take ds at tehir school due to signs of asd, but Paed referring back there. Eventually we had an appointment where ds3 had clearly gone down the asd route and we were asked to aprticipate in a software trial to try and pare things down (ds3 would have possible had a dx of GDD apart from he walked a few weeks too early for target). Nobody had experience of ds3 pre-regression so struggled to get people to accept jhis 'former self' as it were. I still remember psoting here when he was referred and a poster saying she didn't realise we ahd concerns. Anyway, software appt took hours and several Dr's- each with a report from SALT etc which was also worked from, by now SALT had said ASD, OT ahd identified serious sensory problems- we all knew I think. Questionanire apred things down, confirmed asd diagnosis completely, given that day.

So took yeras upon years, and a few weeks after ds3's dx we were invited to a meting at schoola nd the long drawn out quest to see if ds2 has dyspraxia began. Feels a bit like ebing hit repeatedly by a lump hammer but as my guess is that ds4 will one day turn out AS (instinct only) I doubt it's over yet. I hope it is, though.

[asdx2]

For Jack GP fobbed me off from him being 8 month old, caused a scene in waiting room when he was 2 and a half demanded a referral that day (he had kicked a child taking sister to nursery, dreagged another by it's throat to the door as we left and tried to knock over an old woman over en route to docs).
Referred to SALT (implying that I was over anxious and exaggerating his problems) as they conceded that speech was slow.
SALT was very off with me and asked me to wait in waiting room whilst she assessed him. Returned in less than 10 minutes very apologetic saying it's not a speech problem it's a communication disorder and would refer him to a paed.
At initial appointment with paed he said "so your GP thinks this is normal????" because he had written saying I had had PND and he suspected Munchausen by proxy. Ordered a multi disciplinary assessment and referred to Education to start statementing process.
Diagnosed with moderate autism 6 months after SALT referral.

For Lucy saw a different GP at 13 months after sudden regression referred that day to Jack's paed. Saw paed at 16 months did a genetic screen and referred to SALT. Saw again at 19 months and ordered a MDA and referral to education. Diagnosed moderate to severe autism the week after her second birthday

[PeachyTheRiverParrettHarlot]

school nursery at 3.5 sorry

[5inthebed]

Took DS2 for his 2 year check. HV knew already of my concerns, it was an ongoing battle from him being 9 months old. Failed miserable to hit his 2 yr milestones, so she referred him to Childrens Developement Centre (CDC). In the meantime, she made appointment for nursery nurse an their SALT to come out to see if they could help with his "hard" behaviour. In her opinion, he was just being an awkward 2 year old.

SALT and nurse came, said to speak slowly to him and to use a naughty step

Week before the appointment at the CDC, they sent their own SALT and an EP to do some play activities. I was unaware at this time what they were looking for, didn't think for a minute it was autism. They hinted on before they left that it could possibly be an ASD, but didn't want to worry me. Of course that helped

Went to CDC where Paeds underperson took 2 hours wrth of notes from questions asked. Then had another play session with SALT and EP. Then another appointment with Paed. Then a hearing test.

DS2 also had the EP and SALT wisit him at his playgroup a few times to watch him play.

Had an ADOS and was told after that that DS2 had autism. He was 2.6 years old.

[Macforme]

Unable to nurse at birth.. by 4 weeks old HV worried. Failed 6 week check up.. couldn't lift head and no smiling.. didn't smile til he was 11 months old!
3 months of age saw neuro who told us probably brain damage.

as he grew... Speech and language delayed, physically delayed, socially delayed...

no dx despite lots of tests, Started special school at 4..started to speak not long after.. still slurred at 12 but a huge vocabulary

Labelled MLD/SLD formally added autism many years down the line , aged 9. We knew from birth virtually!

[misscutandstick]

DS1 was many years of harrassing at a specialist unit, after being referred by HV at our request. We knew he was ADHD at 4yrs, he was DX at 9yrs.

DS4 (4.2) had our suspicions things werent quite right last summer. This easter we asked for referal to Paed via GP, dx on second visit.

DS5 (3.2y) still isnt diagnosed as his paed doesnt believe in labels. We knew he was autistic from around 18mths, but he was very different from birth (sensory problems, feeding difficulties, etc), but we only saw that with hindsight. He is now blatantly autistic, non-verbal, stereotypical movements, learning difficulties, developmentally delayed. His paed was seeing him from around 3mths old. Current status: waiting on MRI appt to check amount of brain damage.

[debs40]

Thsi is an interesting thread as things seem to vary so much from area to area.

My son has no diagnosis at the moment and I am sometimes bewildered as to what is happening.

I saw my GP who referred him to the community paed (school doctor) who saw him and referred to SALT/OT and consultant developmental paed at hospital.

He saw us and confirmed the apps with SALT/OT and referred also to CAMHS. When I asked, he said he didn't need to see him again. When I asked about diagnosis, he said the SALT/CAMHS would pick anything up.

Community paed says hospital doctor is a gateway service to other services, but I'm assuming they liaise/back at some point?

In the meantime, with appointments taking 6-12 months, both we and the teachers are left none the wiser and are making it up as we go along!

[sunfleurs]

I am astounded by the discrepancies on this thread. Are we all going through the same health service? I don't understand why there is no standard procedure. I can see that ds was very, very lucky to get his diagnosis. We noticed nothing until he was over two apart from not much speech and when it did come it was echolalia and that is what prompted further investigation. Others on here have clearly been dealing with so much more than that from really early on, yet have had to wait so much longer.

I wonder if writing to MP's to question these discrepancies would be an option. I wrote to mine about something unrelated and he was great, got loads of feedback etc.

[debs40]

That is a great idea!

[sunfleurs]

Ok. Going to think about this. What are your ideas about how the process should go? Personally I think that it should go the way mine did. ie

Concerns raised via parent, Health Visitor, Nursery or School depending on the age of the child, child to GP, GP refers to Child Development Team/Multi Disciplinary Team, Assessment, Diagnosis or not as the case maybe.

I don't think parents should have to be arguing with GP's and being fobbed off without referrals, if you have a concern, it needs to be investigated just as any other health concern would be. Referral at parents request.

[debs40]

There appear to be enough 'gateway' services beyond the GP without the GP being an additional 'gateway' particularly in view of their general lack of expertise.

HOWEVER, it must surely be appropriate in some circumstances to ask to review a child in 3 or 6 months before making that referral.

I have known cases where parents have unrealistic expectations of children's behaviour at an early age (e.g. a friend of mine wanted to send her two year old to a psychologist because she seemed always to be 'disobedient' !- suffice to say there's nothing wrong with her now 6 year old daugher). Sometimes, time is what weeds out those age appropriate behaviours from something more significant.

I think multidisciplinary teams should be involved and that all parents should be given a clear guidance leaflet as to the terminology/purpose of the various disciplines involved. They should also be given the number for someone centrally to contact if problems arise during the assessment period.

I think there should also be clear time scales involved and these should be communicated to the parent.

Information should be shared and communicated between professionals and the family.

[modrin]

ds2.. we had suspicions about 18 month as he seemed to stop developing and would do strange lining up of objects etc his physical appearance totally changed over night from a beautiful blonde curly haired boy to sandy haired pale as death boy i read an article in a magazine about autism it sounded like him told health visitor my concerns she said "dont be silly" ill never forget that!!! kept at them after a few months he went to Yorkhill childrens hospital in Glasgow and he was diagnosed with "" severe autism" this was 13 years ago

[cyberseraphim]

We got a dx at Yorkhill too - aged 3.6. We were on a waiting list to be seen a year later at the Child Development Centre but we did not want to wait that long. Concerns since early on but did not have any real experience of young children and their development so was easily conned (including by self) that it would all be okay in the end.

[amberflower]

I am also gobsmacked by the differences in DX procedure on here. Particularly given that we never suspected ASD (and still, in all honesty, are not convinced) yet landed with a DX in a matter of weeks!

Our route was SENCO referred for multi agency assessment after class teacher raised some concerns about social interaction and withdrawn behaviour with peers at school, along with poor fine motor skills and some sensory issues (he likes messy play and gets frightened by loud noises). The appointment came through after a couple of months - I think the referral was sent off in January and we were seen in April/May.

DS had one school visit from an OT, then 2 clinical assessments of 2 hours each (about 3 weeks apart). Each clinical assessment was with OT and SALT during which time we went through semi structured interview with paed. Paed did a medical checkup (height/weight etc) but did not observe or assess DS, she DXed ASD with Aspergers following feedback from SALT and OT. There was no EP assessment.

Looking back over the thread I cannot believe how hard people have had to fight for a DX in far far more difficult circumstances to ours. It just seems crazy, and so unfair. The mad thing is that aside from the issues highlighted by school, which only occur at school, we have no other problems or concerns with DS (and his social interaction outside of school is fine) and yet from start to finish the DX process was 3 weeks!

I would agree with the suggestion by sunfleurs about how the process should go. I would also add to that that I think the child should be assessed by OT, SALT and some kind of psychologist (either clinical or educational), all of which should feed into paed's DX. Oh and ideally the child should be seen both at home and at school/nursery (assuming they are school or nursery age).

They should get mumsnet members running these things, we would do a far better job

[amberflower]

sorry should add DS was 4.9 years at time of DX, now 5.

[pfft]

my dx: one question to GP, referral straight to the wonderful adult ASD clinic, one consultation there, yep, mild to moderate ASD. After 35 years of absolute hell and being labelled "the worst-behaved child on the planet"... which is how my parents frequently still refer to me: they think all this disease-labelling of spoilt brats is just society being degenerate...

[Frasersmum123]

Went to GP at 23 months, wasnt saying any words (Had lost some) dislike of going out and really bad attachment issues to home and me. GP fobbed me off with 'well he is walking okay'

Spoke to HV, she referred us- had paed appointment on his second birthday, referred to SALT and inclusion support. Saw SALT, Saw Paed again x2 who said that he was so A-typical there was no point in delaying a Diagnosis, so we got that at 2.3

Everything has happened so quickly, which I am so grateful for. My GP still refuses to believe he has ASD ' he is just slow'

[mum2fredandpudding]

wow. all so dfferent.
im sur eie said this on here a few times before, BUT

Mine:

• DS1 has meltdown at HV check and didnt show good eye contact. She asked if I would like ot refer him on for a developmental check. she said she didnt think it was a problem really, but if it would be something that I would like, she would do it. I said 'yes please' but TBH was not concerned, I saw nothing unusual beyond stubbornness and perhaps a delay in some speech.

• 3 months later at CDC had 2 hours with one general paed who said speech definitely delayed, but unsure about social development. When pressed said asd was a possibility but he also felt good chance it was not. Got referred on to SALT and ASD specialist paed.

• 3 months later had 2 hour meeting with specialst paed (alone) who asked questions for 2 hours with his back to DS1, then tried to interact/play for 10 mins. DX of middle range ASD made. 2.5 y.o.

Stunned at the time. So suprised to hear that others have SUCH different experences.