Benefits of a diagnosis

[Elfinablender]

I'm just at the very earliest stages of this so, if I offend anyone with my questions, could you attribute it to muddled shock rather than being a general shit?

I've just walked away from a parent consultation in which the teacher is looking to begin an assessment for my reception aged dc which, given the terms she is using, I suppose is along the lines of asd.

It's not that I don't agree with the behaviours which she has highlighted and how they could signpost to a diagnosis, I'm just not seeing a huge amount of benefit of going down that path for my dc. I have some questions that she wasn't able to answer and I was hoping to get some advice here.

So, firstly, how intrusive is the assessment process? When people use wooly language like "a diagnosis allows you to access resources", what actual resources are we looking at here, how helpful are they to my child - rather than say for my benefit or for the teachers? What actual tangible difference would it make to his school life?

Does having a diagnosis mean that you run the risk of having the breadth of your personality reductively shoehorned into a diagnosis by both yourself and others? Will the school continue to use words like 'fixated' and 'obsessed' in an unnecessary nod to a problem rather than 'interested in' or 'engaged in'? Will they stop seeing my dc past the diagnosis?

If it takes several years to get a diagnosis anyway, what's the big rush? What if he goes through all of this assessment for nothing?

As I wrote on another thread asking a similar question, yes I think it is a good idea to have a diagnosis, and the earlier the better. If the right support and the right level of support is put in from the earliest years, your child has a better chance of achieving the best possible outcomes.

It is well documented that those on the autistic spectrum are at a higher risk of mental ill health than the general population.I know a girl who was not diagnosed with ASD until she was 15, and then only after having a complete nervous breakdown. She was then in and out of education for years, and wasn't able to go back into full time education until she was 19, when she had an EHCP, and specialist provision was put in place.

Our son was not diagnosed until he was nearly 8 (although we had recognised the signs and been raising concerns since he was 3). Before that he was considered to be naughty/awkward/lazy/rude. None of these labels were remotely helpful or supportive.They just gave the teacher a reason to shout at him and keep him in at playtime, another reason for our son to hate school, and 15 years later, another issue that had to be addressed through therapy.

I have found over the years, though, that having a diagnosis has been immeasurably useful and empowering.

Because of that diagnosis I read up and researched everything I could about autism, so I knew what it meant for DS and I had a greater understanding of his needs, and was able to think of strategies to help him which made our lives at home easier.

Our son's diagnosis informed our choice of secondary school. He didn't go to the school up the road, with his brothers and all his classmates from primary school, where the SENCO showed complete ignorance of autism and didn't give a toss.That would have been totally the wrong place for him. He wouldn't have lasted 5 minutes there.

Instead, we chose to transport him to the school 6 miles away in the next county, where the SENCO was knowledgeable and compassionate, and staff had huge experience of ASD, where there were links with a special school for children with autism, and where there were facilities for learning in smaller groups and 1:1 in a quiet and calm environment. Because it was the right school, our son settled very quickly and was very happy there.

Over the years, the knowledge that DS has a diagnosis of autism has empowered me to stand up for him and explain to teachers and others who didn't understand him, about autism and how it affects him, and given me the confidence to insist on reasonable adjustments being made for him, knowing that his diagnosis means he is protected from disability discrimination by equality legislation. Even if it is only simple things like asking for him to be exempt from wearing a swimming hat because of his sensory issues. (And believe me there is still a huge amount of ignorance about autism in education circles -you only have to read some of the threads on here to see that.)

But crucially, though that diagnosis has been the passport to the fabulous specialist college where DS has been for the last two and a half years, where expectations are high, where he has made outstanding progress in all areas, where he has acquired the confidence and the skills to do things I would never have thought possible, and where he is so happy that the debilitating anxiety he once had is now hardly noticeable.

If he hadn't had a diagnosis of autism, which is part of that college's admissions criteria, DS would still be stuck at home after the disastrous experience in mainstream FE that reduced him to a complete nervous wreck, and almost broke him.

He would still be hiding away in his bedroom learning nothing, withdrawing further and further into himself, worrying incessantly about his future, and spiralling into ever increasing anxiety and depression.

I am not sure what you mean by "do you run the risk of having the breadth of your personality reductively shoehorned into a diagnosis by both yourself and others?" But if you mean does this mean expectations are lowered , then no I don't think it does.

I think it's about understanding and finding recognised strategies of managing the manifestations of autism (eg channelling and redirecting "fixations") while keeping anxiety levels low and maintaining good mental health. I think it's about having high but realistic expectations, that change over time with the right support and the right education. Indeed, our expectations of DS get higher all the time, as he continues to surprise us with his achievements.

I like to think our son would still be the same gentle, quirky, endearing young man without a diagnosis, but I know that with it, he has been enabled to do so much more than he would otherwise have done, which has given him and us, hope for the future.

We have a child diagnosed with ADHD aged 6, this is managed and under control but now aged 8 we believe he may also be autistic. He's high functioning but very complex. For him the older he's gotten the more noticeable it is and the more support he needs from school. Academically he's doing ok but he needs a lot of social and emotional support that is time consuming for the teacher and changes on a daily basis.

We are very lucky, his school and especially his teacher have been brilliant but it takes time for this bond and understanding to be built and this is where having the diagnosis is helpful. Yes his teacher 'gets' him this year but what about the next and what about when he starts high school and has multiple teachers to cope with.

Our long term plan is to hopefully have an Education, health and care (EHCP) plan set up for our son which will stay with him through his school years. This is a legally binding document which details what support your child will need. I worry about my child everyday, anything that can help him get the help he needs is worth it.

I really appreciate the time you've both taken to reply. I think I need a bit of time to think about it all. I'm not sure I can add much more than that but didn't want you to think I just ignored what you wrote or that it wasn't useful. Thanks.

Yes @SleepyPaws it does become more obvious as they get older, and the gap between them and their peers widens.

If they are reasonably able, they get by in infants as everything is much more visual and "hands on". The problems start in juniors, when teaching and learning become more abstract and complex, social relations are more sophisticated, and expectations are much higher. As you say, some teachers "get it " but there are a whole load out there who don't.

I know you are asking about resources, but from a personal perspective, the benefit of my son knowing he has autism was immediate. He said "I knew I was different mummy" and his anxiety dropped significantly and he started sleeping through the night. So for me that peace of mind for him is enough in itself.

Resources - I guess how long is a piece of string. Speech therapy (very important as your child may talk, but that may not understand - receptive speech) or have problems with communication. My dd does an online programme to help with social communication. She has a decried with a ta every day to deal with issues she may bring home from school. As she gets older, she may struggle with many things - concentration, processing - it might not become apparent until older. I think a diagnosis is a good idea, you don’t know how ASD impacts a child as they get older and it’s accepted that early intervention is key.

Ellie, that is a fantastic post. I hope Google produces it for anyone thinking about the benefits of diagnosis.

I agree wholeheartedly by the way.

And with niceup. One of the best things about diagnosis has been my child pointing out that events/places are not autism friendly. She knows the world is wrong and crucially she knows that she is right. She is not faulty, they are! It's fantastic.

My DD is in reception and despite being Dxed at 4 she has just finished the last of her autism-related supports (she got a play support worker once a week to help her with lunchtimes, but she now plays well with her friends so the support worker is stepping back). She finished SLT (who was working on turn taking and sequencing) before Christmas.

So you could say "what's the point of her diagnosis?" but to me the point is:
a) I can already start to talk to her about difference being good, and how different people's brains work differently - so when the time comes to talk about autism it's a positive and not a shock. Although she doesn't know the label "autism" yet, she already knows her brain is very sensitive to noise and busyness and very good at focusing on something and remembering things. She is also starting to understand that she finds change stressful but has techniques to help her deal with it. I'm not sure we could have helped her get to that level of self-understanding so young if we hadn't known (or at least suspected) she was autistic.

b) The school know and understand her needs better, so e.g. they have turned the handdryers off in the bathroom, they don't hurry her out of the lunch hall after lunch to play (she sits and has a very long lunch while the lunch staff tidy up and then goes out for a shorter play a little while after the other kids having "recharged" her batteries). When they had a drumming workshop they were prepared for her to not want to join in and had an alternative plan in place. When the fire alarm goes off they know to look out for her and help her get out of the classroom. These things all help reserve her energy for learning and socialising.

and probably most importantly:

c) although she is coping really well with friendships now, I remember how shitty being a teenager was, and how impenetrable everything became (probably especially for girls but I think even for boys). If at some point she needs much more support (e.g. if her mental health starts to suffer with friendship problems) we don't have to start at the bottom of a waiting list for diagnosis before she can get it, and I don't have to worry about her masking so well that the diagnosis won't be forthcoming (a lot of bright children get very adept at masking and may be missed if the assessor isn't very good).

So far at least I haven't seen any reduction of expectations for her academically (after all, it's just as easy to teach her to the same level as everyone else) - but definitely a bit more leeway given socially and in overwhelming sensory situations so she can take part as much as possible but on her own terms.

But I do get where you are coming from, because I was definitely worried about "labelling" her and whether she would be constrained in future opportunities when we first learned she might be autistic. Now I understand autism better and that it is (at least for DD) really a difference rather than a deficit (the only thing that makes it appear a deficit for many kids on the spectrum is that the world is not optimised for autistic people), I feel much less worried about labels.

Well said @Ellie56 this is where we're currently at. He can work independently (not quite to the level of his peers) but he's really struggling socially and emotionally. Having a teacher who's sensitive to these needs has been a game changer this year now we just need to insure this happens each year!

For me the importance of a diagnosis for DS is that with or without one he is still autistic and he will know that he is different as he grows up. His diagnosis helps us to understand those differences and it protects his right for reasonable adjustments to be made. Mainstream schools are not set up for autistic children. My DS coped ok at a private nursery, but when he moved to preschool he fell apart. We had access to specialist teachers and strategies were put in place to help him, but even though we were on the ASD pathway it wasn't quick and it was months before the right support was in place. Other children might cope very well early on, but demands do increase. Getting an early diagnosis means understanding and support can be in place so hopefully a child never has to reach crisis point.

I understand your concerns about the use of negative language. I struggle with this too. Reports still floor me, although I should be used to them by now. Talk of deficits, obsessions, abnormal development etc just seems to reduce a child to a list of their difficulties. It is hard though, because if you are too positive then it begs the question why is help needed? If you describe a deficit as a difference will it be taken as seriously? I don't know the answer. I tend to separate my own views from the language I know I have to use in reports. I think that at the end of the day, as long as a family we continue to view DS's love of animals, for example, as a special interest that needs to be fostered rather than an obsession it will be ok.

Just to add another benefit for you. Dd10 was diagnosed when she was 8, dd7 was diagnosed when she was 5. I was told that she was a threshold diagnosis but it was clear to them. I accepted this because it confirmed the way I should parent her eh, I’d she had a meltdown would I get cross if she was NT? Would I look for triggers if she was autistic? If it was a food aversion, would I accept it if she was autistic, persist With trying if she was NT. rubbish examples, I know, but it really does impact the way I parent.

At 5, dd didn’t have meltdowns, but by 6 was having full-fledged meltdowns in public 🙁

That's just it magic. My dc doesn't have the harder signs of autism, he has good expressive and receptive language, at home he engaged in LOTS of imaginary play, I've never noticed a problem with eye contact, he's sociable put much prefers the company of older kids.

He has a lot of the softer signs - he is stubborn, he likes routine, he over-reacts emotionally when he is frustrated, he doesn't like to share, apparently at school he walks around with a clenched fist (?).

I think a lot of these markers would sit quite happily on a Venn diagram with being NT, having a strong personality, not liking school and being a little anxious, thinking the kids in his class are a bit silly and you know, being 5.

I just don't think it's clear cut but I'm aware I'm not an unbiased observer.

I know other people have made other points and I haven't discounted them - I'm just still working bits out and trying to see how they fit with my ds.

Again, with the harder - softer thing - I'm not confident with the terminology for all this so if I've got that wrong I'm happy to change my language around it.

I suppose that's what I meant earlier by crow-barring his behaviour onto a diagnosis.

I can see what people are saying that signs for autism may become more marked and serious as he gets older and, given the time it takes to reach a diagnosis, this is a good reason to start the process early.

Is there any way I can work around that? Would it be possible to wait and see if what we are seeing is a product of personality and maturity or of asd? So, if I waited and gave him a little space would it be possible to make up that lost time with say a private diagnosis? Would the school even accept a private diagnosis?

I think it depends on the school (and more importantly the local authority). Private diagnosis should work but lots of Local Authorities look for any excuse to avoid paying for support.

Why not start the Dx process and see what happens? Your DS sounds quite like my DD. She also doesn't have any of the "hard signs" as you put it (no flapping, meltdowns, rocking, etc.), but is definitely quite emotional (big emotions which can overwhelm her - especially around transitions). She now plays happily with kids her own age and is fine with sharing, but when she was younger she definitely preferred older and younger children and adults rather than her own age (she couldn't handle the snatching, screeching etc. - she gets on better with them now they're in Reception and everybody's calmed down a bit).

In the mean time you could read more and watch some YouTube videos by autistic adults and if you really feel that it doesn't fit then you can always stop the Dx process (maybe try Purple Ella's interviews with her children? They are really good: she is autistic as are two of her children, and her husband and her other son are Neurotypical).

But it's very unlikely that he will get a Dx if he isn't autistic (or thereabouts: I think there is a big spectrum of people "just off" the spectrum - probably including me - as well as those "just on"). And you don't have to "do" anything about a diagnosis until/unless you need to (as I said, DD now gets no special support at school other than I'm sure a bit more of an eye kept on her by staff - but if she needs it in the future we should be able to spot any problems early and get supports in place).

He would have to meet very defined criteria to get a diagnosis of autism, and if he's not autistic, he won't get a diagnosis.

But if school are raising concerns now, even if I thought they were wrong, l'd still want to rule it out.

The thing is children with autism can present very differently at home and at school. We used to go to parents ' evenings and we didn't recognise the boy the staff were talking about as he was so different in school. We never had this with our other two boys.

Mainstream schools are very noisy and busy, with lots of people milling around, bright pictures and stuff plastered all over the walls, fluorescent lighting etc which can be a nightmare for children with autism who can have huge sensory issues.

It could be your son is very stressed out by the noise and business of school, which is why he walks round with a clenched fist, and why school staff are seeing things that you don't notice at home, where obviously it is quieter and calmer.

I’d say that a reception teacher telling you half way through the year that they may think your dc has a neurodevelopmental condition means that it is really obvious at school. Did your dc go to nursery there? If it is a new setting, it is really early. I fought for my dc diagnosis as they were uncontrollable at home. At school, they were perfect angels. ASD only needs to present itself in one setting in order to get a diagnosis.

I am pro investigating a diagnosis if there are genuine signs of autism.

The problem with waiting and then paying for a private diagnosis is that its quite a common pattern for children to cope, cope, cope, and then completely fall apart in a very quick timescale if their needs are not met. Its like a staw that broke the camels back scenario.

You seriously do not want your child to fall apart - it is heart-breaking. you might get the diagnosis quickly but just think if you had got it a before there were problems and had gradually put in all the support to stop them falling apart at all.

In the meantime I would suggest to the school that they don't need a diagnosis to put in place support and request they ask for a specialist outreach teacher to observe your child and make some suggestions - lots of LA's have their own specialist and lots of Autism specific schools run an outreach service. These again have a wait to access but its less scary than pursuing a diagnosis and their feedback might make you decide to pursue one or not.

As both a parent of a diagnosed autistic child and with a diagnosis myself, I would say it's much better being autistic with a diagnosis than without, even if only for knowing why you're different.

Research has indicated that parents of autistic children without a diagnosis suffer worse stress and anxiety than those with children with a diagnosis.

I agree with the previous posters, and there's nothing much I want to add... except - when my DS, who is now 9, was 3 yrs old, I had his very first parents' evening at his nursery school. within minutes I was sitting there with tears running down my face. it's not that I didn't recognise or agree with a lot of what was being said but that I truly didn't understand what was being inferred. because his teacher did not come out and give an opinion as to what the issue was. basically, he wouldn't conform, wouldn't follow instructions, had a meltdown when the routine was changed (refused to go to a different room for singing). I put all of it down to him being a very newly turned 3 yr old, who'd never been in any kind of group childcare setting. As time went on and he was in trouble for biting, a new teacher raised concerns that he didn't ever - ever - speak to other children (he'd tolerate them and would talk later to me about having friends and he'd name every child in his class) but he never did talk to another child, but he had a very strong bond with one of the TAs, who wasn't officially a one-to-one but that's how it played out, and they talked a lot. Nursery wanted to put him on the register of special needs. I was appalled, I don't know why, really don't, guess I was just desperate that he'd mature and grow out of it and turn into one of the other kids... Nursery said, no problem, they'd try all the things they would have anyway, no need to formalise it. But now, god now, I wish I had pursued it then. The red flags were everywhere but I didn't know. ASD is in my DS's father's family, and perhaps that's why I couldn't see it because my DS wasn't like exH's nephew (who is more profoundly affected). that there were striking similarities really - bypassed me.

He left that nursery and went to reception at a different school, where he had behaviour problems but no suggestion of anything further, until he was in year 2. even then it wasn't that anything changed but that he had a teacher who understood what it all meant. because of her, I pursued a referral and DS was diagnosed a year later at 7.

I wish I'd know, I wish I'd had that when he started school, because a lot happened that had my son labelled "naughty" and under-achieving, basically failing. because his attention span wasn't there, he's got executive function problems - etc etc etc. I still wasn't convinced he had ASD until the assessment day, when I had 2hrs with the psychologist going through his history. suddenly it all made sense, a million tiny dots joined up, so much that I hadn't known the meaning of became clear. so many emotions, a burst of love and sadness, relief (it wasn't that I was a bad mum and we hadn't bonded), shame for not having known and not having made damned sure he was in the right setting with people who understood him.

another thing, my ASD child at 3 was very different at 6 and again at 9. some characteristics are less obvious or happen less frequently (because we adjust and he is learning to adjust). other things are new. he never had any obsessions/special interests until he was 6-7, I'd have said that didn't apply to him. same with flapping. never before age 8, but now it's pretty frequent. knowing means you can try to understand and so can you and the important people in his life. without a diagnosis my child would be "naughty" and "difficult". he's already had two exclusions, becuase even with a diagnosis, his needs are not always met to the correct degree. being autistic doesn't give him a pass for unacceptable behaviour but it allows it to be interpreted more accurately.

best of luck to you and your DC. :)

Our Ds is 14 and undergoing an ASD assessment at the moment. Interestingly his reception teacher told us at his first parents evening that he was 'different' and that something wasn't right. Unfortunately neither she or the school offered any kind of advice or support.

He seemed to cope okay through most of primary but we began to notice his differences and struggles. Things started to fall apart a little in year 6 and his transition to secondary was not good.

Secondary school has not been great at all but he is so quiet and complient that he is often not noticed. We approached the school last year when he was in year 9 as his anxiety, rigid behaviour, communication and sensory issues just seemed to be getting worse. It turns out that some of the staff had noticed problems too. He was referred and he is now waiting for the speech and language assessment part of the asd pathway.

I really feel guilty that we did not pursue a diagnosis earlier. I do think things would have been easier for him if we had. He is now 14 and it's such a difficult age and then you add on top that he is having to come to terms with his differences and go through assessments. I feel so sad as all we want is for him to be happy and reach his full potential and I know that if we had helped him earlier he wouldn't be so unhappy now.

Good luck with whatever you decide.

@MrsMartinRohde

"he's already had two exclusions, becuase even with a diagnosis, his needs are not always met to the correct degree."

Are you saying as a result of the school not meeting your son's needs, he behaved in a way that was deemed unacceptable, and was then excluded? Were these official exclusions?

Useful information here:

www.ipsea.org.uk/pages/category/exclusion-from-school

@Ellie56 - hiya, yes (and I posted a thread about this last week in SN chat, which you kindly responded to :) )

The first exclusion was two half-day internal exclusions, so not technically official. This was for violent behaviour in the playground (one instance of beating a classmate, no injury) and for threatening to kick another younger child (he didn't actually kick or strike anyone).

The second was a two-day fixed term exclusion, which I was led to believe was official but at the moment it's illegal as I have not received formal notification of it, despite requesting it last Monday in a meeting with two of DS's teachers. The exclusion itself happened at the very end of the Christmas term, so almost a month ago. This was for hitting a friend - a classmate - which did result in the child having an injury (DS was appalled and horrified as hurting his friend was not his intention.)

Both times were known flashpoint situations for DS: end of term with timetables all cocked up, and in the playground. I've had meetings with DS's teachers and the Senco to plan around these situations previous to this happening and they were supposed to have a break-time timetable for DS to give him structure. It wasn't in place that day. I've also said he needs closer supervision at breaktime. This hasn't happened. It's sad because they've put a lot in place for DS, groups to work on social skills, etc, and I have seen a lot of improvement. THEY have seen a lot of improvement. In year 4 he had over 30 "penalty points" for behaviour; in year 5 he's had maybe 5, and mostly for small classroom infractions that don't worry me over much. I feel he's been punished because the consequences - at least this last time - were more severe, the other child was injured, and the parents were understandably raging, and school excluded DS. to make a point? I suspect that was part of it. I find it all really hard, because I don't disagree that there have to be consequences for what he did... but... :(

@MrsMartinRohde

So you still haven't had any paperwork re the end of term exclusion. I'd ask for a copy of the complaints policy and submit a formal complaint about illegal exclusion.

Absolutely disgraceful.

DD2 has dyspraxia and various sensory processing related quirks. We deliberated about going down the diagnosis route because at the time we had a superb Reception teacher who was meeting DD2's needs really well and adapting teaching anyway.

In the end we went for the diagnosis for a few reasons - my kids go to an infant school so we knew we would have a transition point coming up earlier than if we were at a primary and wanted to have that clear indisputable evidence trail prior to doing that. It's also been of benefit as this year we have NOT had the same degree of awesome teacher and had one who would quite happily have completely ignored DD2's needs... and having the diagnosis means we've got something to bring her back into line and make sure that provision is adhered to basically (turns out this woman has a track record of pissing about the SEN kids and it's taken a stroppy parent putting the jigsaw together and speaking out about it to give the SENCO the leverage to really tackle the situation... I have resorted fiddle toys to all those poor kids needing fiddles!)

I went round in circles with it - but finally realised that a diagnosis wasn't going to change my child - my child's still the same child she was the day the bit of paper hit the letterbox confirming it all (on my chuffing 40th birthday which did hit me hard).

I won't lie that it's opened the floodgates of resources and support for us (we even got discharged from NHS speech therapy as her receptive language is fine - despite her having a "significant speech defect" because of her verbal dyspraxia) - but it does open up the gates of accountability somewhat in terms of making sure that the small stuff gets done. Our current class teacher bloody hates me because I have picked up on so much not getting done and made sure that it is!

Oh yes @HexagonalBattenburg you definitely have to be that parent!

If you can afford it, I would pursue private SLT. Our son was discharged from NHS SLT 15 years ago, when he was 9.

Four years ago he was assessed by SLT as part of the EHC needs process. Even though he was functioning at age 10 in some areas they were unable to offer him anything.

We had to fight for the EHCP and the specialist college he and we wanted, but he is now benefiting from SLT, which is provided onsite. It has made a huge difference.