Autism / Aspergers - pre-diagnosis

Molzer2

Hi All,
We've a 2year 9month old boy who's speech development is well behind where it should be. He was quite ill during his first 18months approx, lots of infections, including pnuemonia so we didn't expect him to be breaking records at his 2 year PNH check. Fast forward he was seen by a S&L T in Feb and she suggeted he would be suitable for some S&L T - he attended his first group S&L session recently and his behaviour was a disaster. Therapist suggested he would be better suited to 1 to 1. His behaviour is erratic and although he interacts with his older sister and us at times at other times he ignores us. He generally completely ignores other kids in playschool and playgrounds and ignores visitors at home. He has about 30-40 words but other than saying "bold daddy" he doesn't put them together. He's quite smart and well able to figure out how to get what he wants, if he can't get it himself (which is his preferred modus operandi) he'll drag, point and even dance on the spot and mutter some babble to get his point accross.
Anyway following the disaster with the class we made an appointment with a new GP who is also a paediatrician, we had a long consultation where she interviewed us and observed him. She decided to refer him for the early intervention centre and that's where we are. She said it could be 3-4 weeks but a lot of people here have had to wait 3-4 months. I had done some research myself and probed her to see what her gut instinct was and her hunch was there's "definitely" something, I asked her if it was Autism and she said it could be Aspergers.

I'm kind of surprised by this because AS kids apparently have good speech development!

Sorry for the long post, I've read some threads here outlining how people have effectively lost out on 12-18 months being pushed from pillar to post and would really appreciate any advice on what we can do for him ourselves to help him and to reduce delays in the system.

Thanks for reading this.

Moonbeam

The main may to avoid long delays is to go private.

Molzer2

Ok, is there a private multi disciplinary service or do you mean start with a private speech and language therapist?

orlaeryn

Hi there,

Could have wrote your post myself 2 years ago, our little girl was 19 months when we started to have our concerns. She had started to develop some language but then seemed to lose it. To be honest i didn't pay this much attention, but then we noticed she was not interacting well with us, her sister, or anyone at all for that matter. She sis not respond to her name being called, despite us knowing her hearing was fine. We also started to note some obsessive play..At the time i brought her to numerous toddler classes and she spent more time flicking the switches on sockets and ignoring the other children than anything else. Then there were the tantrums..oh the tantrums..due to her high levels of frustration she would scream, roll on floor and repeatedly band her head off any hard surface. Was a nightmare time.

We went for full multidisciplinery assessment,( assessment of need through HSE- we were incredibly lucky and all done within a few months.), she had Psychology, speech and occupational therapy assessments done, and what we already knew by then, was confirmed. She had Autism. She was diagnosed high functioning, with severe language delay.

We had started her in an early intervention group before we got the diagnosis as we knew it was coming. She had intense speech, occupational and social therapy 3 mornings a week for the guts of a year. We saw her change before our eyes, she has come on so much, i dread to think what would have happened if we had not started some intervention.As we all know early intervention is key in hepling kids with any disability.She is mainstream playschool now, but moving to a specialist school in septemeber for a few years..there is a lot of hope, and so much you can do

Anyway, to answer your questions at last!

People with Aspergers generally have normal speech, but apparently more children with speech delays are being diagnosed with Aspergers. I am no psychologist, but i think there is a fine line between high functioning autism and Aspergers, and often there is confusion with diagnosis.

You can go through the public system, some are lucky and get seen to quick, we did. Others have to jump through hoops for years to get all the assessments done.

I would advise you stay on public list as it is good to be in the systen as such, HOWEVER as said by other poster, I would also urge you if you can, to get a private assessment done asap. If he has ASD, a psychology report outlining this will open a lot of doors for you, you can apply for home tuition grant, put him on list for schools etc..if you have to wait for hse reports you will lose vital time.

Same goes for speech therapy- if you can afford it, go private. At that age most of the work will be done with you as his teacher, but you need someone to guide you. .

That's it i think! You are doing the right thing getting him checked out, i hope everything goes well for you..:)

Molzer2

Thanks so much for your detailed post, I've been busy researching and have done a few screening tests online myself and they are all pointing to something being up.

I'm torn between differing emotions of sadness and shock and trying to get things moving. One I did was the ATEC baseline on autism.com and he got 74 which puts him in the 50s percentile for severity - that seems fairly conclusive.

I'm feeling overwhelmed right now and my wife and I are sometimes trying to convince ourselves that what he's doing is normal. One thing for sure he's completley different to his sister who is very outgoing, she started school last Sept and if anything it seems at this stage that he has made little or no progress with his speech since then. He interacts quite a bit on his terms when he wants something he can't get for himself so it's not like he's the stereotypical rainman. Having said that the bedtime routine is the highlight of the day as it's about the only time they do things together, he loves the bath and somtimes tries to climb in even if we're not going to bath him! He almost flicks a mental switch as he climbs the stairs and looks forward to us covering him with our duvet and hiding while he struggles to get out. Even when we hide in the same place over and over again he seems to get the same kick out of it when we jump out and shout surprise! He also loves to wrestle and tickle his sister on the bed. This behaviour is hard to reconcile with our idea of ASD. Hugs are scarce and kisses happen about once a month so they are pretty precious!

Like yourselves we don't want months for an official diagnosis, I came accross the assessment of needs form while ago and I will get this filled up. I'm kind of surprised that the specialist we saw the other day didn't suggest thos but maybe she that the early intervention with the multi disciplinary team is the way to go. She felt we would be starting that in about one month.

We have an appointment to see the S&L Therapist on 7th June so I'll probably wait for that to see what comes out of that before arranging a private consultation. There's been a single consultation and the group fiasco session so far in about 4 months dealing with them. She suggested 1 to 1 after the failed group session so we'll see if that can be arranged in the near future of not.

I think your suggesting a meeting with a private child psychologist, is this correct? Forgive me if I seem pedantic, just want to be sure. Is this something you'd advise?

Thanks again,

cynder

We questioned autism and aspergers (ASD) and adhd, got a diagnoses last month of a severe speech and language disorder, scored 1st percentile for receptive/expressive/phonological speech (phrased 'out of a hundred children 99 children will do better than my son in all 3 areas'), got eh all clear from autism because he has good social skills (now after 2.5 years of therapy, he didn't in the beginning because he couldn't talk to anyone or understand anyone) my lad sees the psychologist/early intervention educator and the SLP weekly all done on one to one as he has behavioral issues, adhd has not been ruled out. My son has been in the early intervention services since he was 2 his now 4 and a half and were only now seeing progress, he needs an sna for school (dont know if we will get one) and resource hours. He has a pre school assistant 2 days a week the preschool take him for 2 other days when there are extra staff on, the other day he doesn't go because he is too much to handle.


To get the assesments done quick your child has to be referred via the assesment of need 2005, this can be done via your PHN (public health nurse) you should know what your child's needs are within 6 months. (your childs need being multidisciplinary) also if your child's needs change you can use the very same form to get re assessed (next year if my sons assesment says they recommend an adhd assessment the assessment of need from i first filled out for him at age 2 still can be used to get him assessed for adhd within a 6month period)

My son should have been diagnosed earlier but because he ticked so many boxes in all different areas it was hard to diagnose him, now that his older it became more obvious it wasnt autism, i still question pdd-nos and will ask about that later in the year, he has another assesment due in jan next year and that will determine weather main stream school suits him or if he should go to a special school.

Molzer2

Thanks for your reply, it sounds like a tough road. That's very interesting information, I'm glad your making some progress, it must be painstaking but at least your progressing.

So in summary, do you recommend we meet the PHN immediately and request an assessment of needs? The paediatrician we met last week told us we should be called to the early intervention centre in Kilarney in 3-4 weeks. Is this the same an the assessment of needs? Sorry for the questions but I'm a bit confused by everything/

cynder

Yes get the assessment of need filled in and posted off asap. people with the assessment of need are prioritised over those who dont have it. The assessment of need is a guarantee that all assessments will be carried out within 6 months. without that guarantee they could take longer.

The assessment of need is a form that you fill in (and referal to the early intervention services) who then assess your childs needs. without that document they could take a year. give your PHN a buzz and she will explain in more detail about it.....

I would highly recommend you get it, even though the ball is rolling ......

Molzer2

Ok, Thanks for the advise,

My wife got a phone call from a woman in the HSE early intervention centre, she had got the referral letter from last week and she asked my wife a lot of questions. She asked for permission to speak to the preshool my son attends and she said she would also speak to the Speech & Language Therapist who he saw last week and is due to see next week.

She explained that the early intervention team will meet monthly (next meeting is 8th June) and that they would discuss his case and decide if he needs assessment. In the meantime he would commence "intensive S&L therapy and his progress would be reviewed in a few months".

She explained that he was still young and most kids sent for assessment would be in their preschool year or even started primary school. He would be due to start his preschool year in Sept 2012.

This sounds to me like he's not a priority right now and even though the paediatrician recommended assessment they may not go ahead with it for some time. Is this familiar to anyone?

We'll get the assessment of need form filled in in the next few days, as you say this way he will have to be assessed within 6 months.

cynder

Typical runaround!

my son was 2 and a few months, they kept on putting everything off, he only got assessed properly (full asd assessment) cause he was going to school and he needed the reports for school, he did have other assessments (not a full asd assessment) before starting preschool and they recommended a preschool assistant (which he got for 6 hours a week (2 preschool days)) keep pushing, early intervention is the key that's why its called early intervention.

The assessment of need is legal and binding, where as word of mouth is worth the paper it is written on.

Beef

Molzer2 wrote: »

We'll get the assessment of need form filled in in the next few days, as you say this way he will have to be assessed within 6 months.

Hi Molzer2, if you haven't already - send this off now! Can't stress how important it is in terms of kicking off getting the services you may need. It's a long road but a lot longer if you don't open all avenues available to you.

Best of luck.

Molzer2

Thanks for the advise everyone.

orlaeryn

Hi Again,

You can go through the Disability act 2005 ( assessment of need), we were lucky with this process and it was all completed well within time frame it was meant to be, but i know from talking to lots of other parents, this is often not the case, so i would just say to be aware you could be left waiting..

If you are concerned don't be fobbed off just because your child is younger than other children they normally assess- It's called early intervention for a reason, so the earlier the better.

As i said before if things prove to move slowly, or you feel they are not taking your concerns seriously, if you could afford it i would pay for private clinical psychology assessment. If your child does have asd, you need it in writing so you can apply for supports such as home tution etc..the earlier you get these services in place the better.

I am not knocking the assessment of need, for us it was great, as money was tight and it allowed us to pump funds into gettng the therapies our daughter needed such as speech and language therapy etc, rather than pay for the assessments ourselves..However,that was near 2 years ago, there are more cut backs, staff shortages.. i also know of a few people who are only getting asd diagnosis for their kids aged 4+ as the hse were reluctant to diagnose so young. These kids have missed out on so much help..

Molzer2

Thanks for the advise;
My wife and I took him to the 1 to 1 S&L therapy (HSE) today. He was ok, we had a good chat with the therapist, she could see him using words once and refusing to repeat them. She thought we were right to go for the early intervention assessment. She said the woman in the early intervention had rung her but thay hadn't got to speak yet. We told her the jist of her plan i.e. that she would recommend a course of intensive S&L therapy if the team felt a full assessment wasn't necessary. The therapist was definitely in favour of the full assessment.
I made a mistake with the dates, their monthly meeting is next Monday 13th so hopefully they'll decide on the assessment, if not we'll fill in the assessment of needs form next week.

Molzer2

Some progress to report,
He is being accepted for a multi disciplinary early intervention assessment and this is supposed to start in a few weeks.
In the meantime we saw a private S&L therapist last week. She was a lot more experienced that the HSE one. She gave us more literature too but felt we should go down the road of the early intervention team and the psychological assessment. She wouldn't guess at what is wrong but feels he definitely needs assessment.
This is very daunting and terrifying but at least we're moving in the right direction.
Thanks once again for your posts.

cynder

best of luck with it.....

orlaeryn

That's great, you are on the right track! The fact you are being referred to early intervention team is great, just keep on at them now so all the assessments are done asap. It's great you have seen private slt too, as in the meantime you can do some work with him yourself under their guidance..It's always good to go through the HSE too, as once your in the system it is much easier to access different services..goodluck and keep us posted!

Molzer2

Our man had an assessment with SLT / OT & physiotherapist and psychologist during July & August. The main finding was that his speech and language development was in the 3rd percentile. There was no diagnosis made at that stage but they have seen him for a 2 hour session for the last six weeks or so and we're due to get an update soon. Behaviourally there are issues too.

As I read back on my opening posts I can definitely see progress with him. He's happer in himself and a lot more affectionate, loads of kisses going now:). He's got a lot more words now too but still isn't putting them together. The tantrums are pretty ferocious. He has an incredible memory for places and no matter where we drive to we seem to pass something he likes (playground, library, toy shop) and he goes ballistic if the car doesn't stop. These are really difficult for my wife to manage as she doesn't have the strength to manage him if he goes against her.
Struggle on I guess.

cynder

It gets better, my guy started school in September and his getting on great, he hated it for te first 3 weeks but he really likes it now, the teacher is well aware of his difficulties and she is great with him. His speech has really improved since starting school. He was in the first precentile so it was a major difficulty, it still is but getting better each week, tantrums are calming down aswell, visual clues really helped my guy...


I'm sure you will see improvement like I have, however my guy turns 5 in December so you still have a while to go yet.... There is light at the end of the tunnel.

carrieblack

Might be too late for original poster but for new ones you have to know the process.
We started down the state assessment route with out 3 year old DD and I really wish id known then what we do now. The Assessment of Need AON thing is a joke. We thought that we had to have the assessment by 3 months as they promise. NOT TRUE. They only have to decided what people your kid needs to see in the 3 months. So its just a weeding out process to say right you need an assessment or you dont. Then you go on the waiting list and that can be upwards of 3 years at least, we finally got to the top of the list 3 and a half years later. My sister went private and they had my niece in and done in like 4 weeks with a report in their hand! They used a psychology service in Waterford and they were fantastic explaining everything and good follow up helping her with all the forms for allowances and stuff which the HSE didn't even tell us about we could had for years. Her assessment and report cost 375 euros. She found them by typing in Waterford Psychology services. They are based down in the mall in Waterford and have offices in Cork and Dublin city centre. We spent more than that on just phone calls chasing up the HSE for years!

LegacyUser

If using a private psychologist be sure to check their qualifications.
I don't know who the psychologist CarrieBlack is referring to is, but there was an article in the Irish Examiner in April expressing doubts over the qualifications of a psychologist operating in the south of the country.

When it comes to accessing services for a child with autism, there are some people in various parts of the public/civil service who want an excuse to deny services, and any doubt over the validity of an assessment may be used.

This is not to say that you shouldn't use a private psychologist for an assessment, just that you should be careful which psychologist you use

carrieblack

Moonbeam wrote: »

The main may to avoid long delays is to go private.

Yup! I would agree. Just be careful who you choose my sister had to go private and was charged 375 by waterfordpsychology.com who helped her with all of her forms to get the state services and benefits. She was quoted something like 600 by a crowd in Cork Apex who have a terrible reputation so avoid at all costs!

Roselm

ConcernedParent wrote: »

When it comes to accessing services for a child with autism, there are some people in various parts of the public/civil service who want an excuse to deny services, and any doubt over the validity of an assessment may be used.

This is not to say that you shouldn't use a private psychologist for an assessment, just that you should be careful which psychologist you use

Well doubt over validity of an assessment is serious!
Just make sure any private professionals you see are going to give you a full report.
There's no use getting a diagnosis if it's just written in a brief letter rather than a full report outlining assessments used and full scores etc

Daintydoll1

I can't post links but a story in today's Irish Examiner casts serious doubts over the academic credentials of the lady behind waterfordpsychology.com.
I had considered bringing my child to see her but won't now.

carrieblack

Daintydoll1 wrote: »

I can't post links but a story in today's Irish Examiner casts serious doubts over the academic credentials of the lady behind waterfordpsychology.com.
I had considered bringing my child to see her but won't now.

I would go by personal experience rather than any story in a newspaper especially the examiner who have such a dreadful reputation of getting it wrong! if this is the same woman my sister saw she was very helpful her report was accepted and they got the services. Every now and again such stories appear to discourage people from getting private assessments. The one from the HSE who we eventually saw went on and on about her 'research' but she wouldn't have known autism if it had jumped up and slapped her in the face! Only for my husband insisting on her contacting the school we wouldn't have even got a diagnosis in the finish.

Daintydoll1

Oh I'll still get a private assessment, just not off someone who refuses to state where her qualification is from. There were too many doubts cast in that story for my comfort.
But I am glad that your nephew is getting the support he needs.

carrieblack

Daintydoll1 wrote: »

Oh I'll still get a private assessment, just not off someone who refuses to state where her qualification is from. There were too many doubts cast in that story for my comfort.
But I am glad that your nephew is getting the support he needs.

Thanks and yeah he's doing brilliantly now and earlier is the better. Love to know where half of these HSE so called 'experts' get their training because nearly everyone you speak to has terrible stories about how they dont want to give any diagnosis. But then that's most likely it because they are told not to overload the support services. If you can get your diagnosis or not as the case may be just get it early. Wish you well in that.