Lost and confused re the diagnosis of ASD

[Sareyggs]

Hi there not posted on mums net for a while but feel I could do with some advice. My eldest son is almost 2 years 8 months and has just been verbally diagnosed with ASD. I have suspected he had it for a long time now but we have been given loads of coflicting info by health professionals. He was discharged from SALT at 21 months despite having very little language. He also saw a Paed at 24 months who was adamant he was not "classically" autistic. This is now something the Paed denies saying, much to the frustration of myself and my husband. It has only been me pushing that we have got to the place we are now at, I knew he was diffrent from the other kids his age and his language seemed odd.
Anyway since he got a new speech therapist things seemed to move very quickly and we went from 0-100 and a diagnosis isn a very short space of time, approx 3 months. Is this normal? Also the paed seems to have had very little input and only seen him for 2 hours, across 2 appts. He has just gone along with the SALT who has only worked with him since late Sept, and a Psycologist who had seen him very briefly twice. It wierd because I have gone from being obsessed that he is autistic with everyone telling me I was wrong, to now almost being in denial. Everyone keeps now telling me to join support groups and the Autistic society but I can't bring myself to pick up the phone. I'm now so scared what the future holds and don't know where to start with it. I haven't even phoned the Paed back to say we want a formal diagnosis and I don't think my husband wants it. Finally the Paed said at this point in time he couldn't say where he was on the spectrum, but he didn't think he would be at the worse end and he has many strengths including a very large vocab. He also said he might have AS rather than ASD becuase he does have language and the definition of AS is language by 3. I'm so confused, is there any benefit to a diagnosis when there are so many unknowns?

It's not easy getting our heads round to hearing 'it's asd'. And 3 months is indeed a very short time. Give yourself a bit of time to digest the news
Not sure how they are dealing with dx procedures in your area, as it varies, but in our case, it has taken a bit longer to get anywhere, my DS is now 4, he has been under salt since age 2, and it was only back in april (ds was 3.5 then) that we heard for the first time the words 'mild asd' (from paed).
To be honest, i consider this verbal dx as nothing more than a 'pre-dx', although i'm pretty much convinced that DS is on the spectrum , i try to keep an open mind about an eventual formal dx. And until they (CAHMS) will have done all the tests, observations and assessments necessary to confirm and give a more precise dx than 'mild asd', i will have days when i agree with it and days when i'm still a bit in denial. There are times when i wish i had never took my ds to see the paed and opened this nasty tin of worms. Because before ds was just ds with his speech delay and his quirkiness, now he has the scary name of asd looming over him.

Formal dx can help in a number of ways like hopefully getting the right kind of help with salt, OT,... access to support groups, help at school : statementing (although it isn't a garantee), and generally a better recognition and understanding of difficulties and needs. (ideally!)
These are the reasons i want my ds to get a dx.

Good luck

Thanks mysonben, I have read a few of your posts on mums net, think you sound like a great mum. Have they confirmed whether your son is AS or ASD, or are you still waiting for all that? My son actually does have language but they are saying his language and understanding is delayed as he often just quotes back chunks of language and phrases out of his favourite books without necess understanding what they mean. He struggles to know which word to use to communicate although he is making progress with this. He also generalises language. He has very delayed social and play skills, not interested in other children, and is very odd at times with spinning etc. On a positive note he has good eye contact, a wicked sense of humour and can be very affectionate, on his own terms. I also think he is very bright, but definately different! The Paed told me CAHMS was only used for behavioural issues and wouldn't be involved in a diagnosis, does it vary substantially by area? I live in Scotland and know health system different here. On another note how are the support groups? Are they ok or scarey? My DS also attends mainstream nursery although I think there are times when the staff struggle to understand his needs, but apparently they are going to get a support worker to help with this. Its such a minefield isn't it?

Hi Sareyggs
I don't usually post on mumsnet (apart from info about the stuff we are trying to do in Scotland) as I am a professional rather than a parent...however someone else that does post on mumsnet told me that you had posted (if that makes sense) and I thought I would pass on my email address if you would like to email me OT...i am and independent autism specialist based in Scotland and provide free post diagnosis support/ info for anyone that wants to get in touch- [email protected]

we are currently setting up a more formal post diagnosis support and early intervention service in Scotland, with an autism specific nursery and home support service- but in the meantime please feel free to get in touch if you think it would be useful.

Sare It wasn't me who passed on your post to RGO, but I can vouch for her.

I'm a little ahead of you in all of this but my heart bleeds whenever I hear of another mother having to go through what I have. I can only reassure you that this is the absolute worst time and it will be for a little while, but that things do eventually get easier.

Take up the offer from RGO. I don't know what your local NAS group is like but you might like to phone in advance and ask how many people they have with preschoolers. They represent the whole population so you can feel a bit out of your depth in discussions about teeenage problems or adult work issues. They might be able to give you details of local preschooler support groups and they could send you things.

Your son sounds lovely btw.

hth

We were in your shoes in July and it does come as a shock as even if you "know" you still want someone to tell you you have got it wrong. It depends from area to area but where we are its the SALT and psych who really make the diagnosis and the paed just brings it altogether and does follow ups - which is really just checking if we need other services. Our paed is lovely but not an autism expert - paeds are just GP's for children. Some will have developed a particular interest in ASD but some will have other areas of interest. Here its the clinical psych who really does the diagnosing (although the parents aren't supposed to know that). He only saw DS for about an hour, but in our case that was enough! The SALT also saw him at nursery and home. We got a diagnosis in 3 months from seeing the paed, but our son regressed so it was an obvious case. You should now be referred on to an autism team of specialist teachers or portage workers, depending on whether your son is at home or at nursery. Also find out if you have an Earlybird course in your area (NAS website) its a parent training course for those under 5 who are newly diagnosed. You will probably have learnt more off the internet before you get on the course but its a good way of meeting other parents in the same boat.

When you have recovered from the shock you can look into DLA, education choices etc. But it will take time to just take it in.

I spoke to Ruth and she was very generous with her time just talking me through options even though we did not go ahead with her services, being too far away.

Haven't 'met' RGO but she sounds wonderful, I'm hoping to set up something similar here in Wales when I qualify because it is so lackiong, really would advise going for it (nice t omeet you RGO, btw-peachy,4 ds's,2 with asd,doing an MA atm, used to work for homestart in support role).

From my own perspective, I think there's benefit todx but that it takes time to get past the dx process and really feel that. It'sa shock,and one that often causes a bereavement type process to kick in. I usually advise people to give it time and gradually build up support as you are ready. Our NAS has an outreach service which lets you meet the lady in your home when you are ready and ask about services- she's no miracle worker but the things she has provided have been the key factors for keeping us sane, such as the befriender scheme.

But don't rush- everything hAs to be at your own pace.

The whole AS /ASd thing.... there's a lady who came to talk to us many weeks ago now who is on the national committees for avrious things,and the DSM people are talking about doing away with the whole distinction apparently- because in many cases it is unhelpful. Many ASD's for example have a service provision cut off which bars people with AS, and also the level a child is at when at preschool can and often does change tremendously- labels are great for accessing services and also giving a sense of why /identity etc to both of you over time- but they can be self limiting, so there is at least an argument for a more fluid child based approach.

And IME with one of each, I honestly don't think it matters- what matters is to deal with the child before your eyes. My ds1 is in MS, AS....and by far the harder work of the two, needing DLA at HR, and looking at a specialist placement for comp level; ds3 OTOH is autistic,limited verbally, in SNU provision, gets MR care and is far the easier to parent. Differentiated dx or no, I know which is harder in RL for us.

But I would reiterate- for now the key is to adjust, then gradually make links.It sounds as if you are blessed with the contacts you made here,and will bew signposted to great local services...excellent.

It would seem down here, Cahms have different teams and the social and communication team do the dx. It is Saucepans (part of cahms) who deal with the behavioural stuff ...we're still waiting to hear from them!
I'm afraid i can't comment on the support group, there is a local NAS group near me but i'm too scared of going! (sounds pathetic i know). Scared is the wrong word actually, 'anxious' fits better.
As for what we have been told, paed isn't commiting to any specific dx such as AS or HFA, she said 'your ds is on the spectrum, he appears to be on the high-fonctioning end,...mild asd'. But as my DS has got a important speech delay (although he did get speech before age 3) i don't think he would get an AS dx, i was under the impression that any speech delay would n't meet criteria for AS.
In fact consultant paed who did the referal to CAHMS, said yes DS presents with autistic traits and behaviours but thinks DS could be bordeline re: formal dx.
They both agreed that a more in-detph assessment was needed to get the answer.

MSB that'smy understanding of dx criteria (significant language delay fullstop,rather than before 3) but it is one of those things I understand they arelooking to clarify as it is open to interpretation.

All the profs. I know seem to agree that our interpretation is the correct one, though.

Here the dx is done by a PAed or a Psych; I think technically only those or a specially trained psychologist can sign off, but sometimes provision is made for other profs todx and one of those to sign off; I am fast learning that what I am taught as best practice isn't necessarily actual practice, sadly.

I'm scared of the local support group, absolutely; ds3 is in a palce where half the time he is the most severe and I get a complex, the rest of the time he is the most mild and I get... a complex LOL. I find that esp.with the MS /SNU distinction. And with DS1 there's an assumption that he's OK really, AS isn't anyuthing much (then they get to know him!).

That's right VirginPeachy, that's how i perceive the difference between AS and HFA when it comes to dx. Although i'm speaking only from what i 've read, and my DH 's cousin s'little boy was dx with HFA last year, and when she quieried why HFA and not AS as he was nearly 4 and could speak, they told her that although he was verbal he had a speech delay so it was HFA.

Although again apaprently they'relooking at the definition oflangauge for diagnosis of asd 9and as should they keep it)

Hey ho,what a lot of fun that'll be, relearning everything LOL

When my ds2 was dx last year with ASD, the paed hadn't seen him half as much as the SALT or EP. From what I gathered, they were all part of the assessment team, working together. Also, there was this woman, can;t remember what her role was, but she asked loads of questions and took loads of notes before I even saw he paed.

It takes ages to get used to the ds as well, so you are really just a "newbie" in terms of dx . I would try get a formal dx as well, as you will get more help for your ds with one.

And apply for DLA, get someone to help you fill the forms out, you're entitled to it for your ds.

Hi Sareyggs - I have a similar story to you.
DD 3.6 diagnosed a couple of weeks ago. Was observed by someone from Early Inclusion Team at pre-school who referred to Pead and Speech therapist at Child Development Centre. Had a half an hour session with them which was mainly just to get details about DD's current behaviour. DD was with us so they could observe her but in my opinion I really don't think it could have been called an assessment for DD but they did refer to her behaviour on that day in their subsequent report.
We had half a dozen sessions with Speech Therapist. Speech Therapist and Paed then went to playgroup to observe her for approx 1hr 30 mins. A few days later we got diagnois so all the above took only NINE weeks. Also, in my case it seems Speech Therapist had decided on diagnosis.
I must admit I was shocked that the whole process seemed so short.

I think their decision was based on her really really poor social interaction with her peers. It does seem to me that some areas of report seem a bit "wooly" sorry - for want of another word.

Anway enough of my story!! To get back to your question - we have been advised to book on an earlybird course which is for parents to meet other parents in similar situations and to gain more info regarding ASD.

Also, DD will attend a social skills course.

Also, DD's nursery are trying to get 1:1 for her.

There is also DLA to claim (although I know money is no comfort) but it may be useful if you want to try alternative therapies not provided on NHS.

Pead was vague with where on spectrum DD was as her said she was too young to have her IQ tested. I think that is why they just say ASD when children are so young. Aspergers comes under the ASD label.

The way I see it DD is going to develop diagnosis or not but at least with the diagnosis she will have extra help to hopefully get the best outcome possible.

All the best with everything

Hi Sareyggs,

I am a mum in Scotland with DS aged 3. RGO has done a lot of work with him and I can recommend her 100%.
My son is still to be diagnosed although the paed said he was showing traits of autism. You mentioned your ds was in mainstream nursery. Have they mentioned any difficulties?
Also, the earlybird course that people are referring to-I was told we could only access it after a formal diagnosis. If you want to contact me for further info relevant to Scotland, you can cAT me (click on the contact poster button on the right hand side).

I also recommend that you get in touch with RGO as she is based in Scotland and is very good. The NAS is not very active in Scotland and also tends to be more focussed on young adults with Aspergers - though I believe that may a much wider issue than Scotland. The NAS in Glasgow told me their services start for children at age 12. It is also not that common to meet other parents of pre school children at support groups. So all in all, I wouldn't worry about that side of things for a while - just concentrate on getting your DS some help.

That varies cyber, we had an NAS rep here (not Scotland) within a week of each dx,and ds1 (then 9) had a befriender (she went back to Ireland sadly, waiting for another); we were also offered the chance to get one for ds3 who is 6.

A lot of it seems to depend on local NAS activities rather than the universal central stuff (that goes with very charity I have known in depth).

Yes it varies - I have heard there are pockets of Scotland where NAS support is very good .

Sorry it has taken me so long to get back to everyone who has replied, Christmas and various viruses got in the way! Thanks to everyone who responded here, your advice is spot on. RGO I am sending an e-mail now.

Thanks againx