Autism discrimination when adopting a child

Jake Snow

A couple of years ago my wife was told that she could no longer have children due to a medication she needed to take to prevent her being in constant pain. It’s necessary but as you can imagine caused us a certain amount of heartache upon hearing the news as we were just considering expanding the family. We’d delayed having any more children for years until we were sure our son’s needs could still be met whilst caring for another child.

After a year or so we’d decided that the only path available was adoption. Fostering was considered but we knew we couldn’t handle constantly saying goodbye to a child we grew to care for. My hat goes off to those that can and do. We did our research, attending an open afternoon, completed our application and had the home visit. Everything was going fine and the home social worker, and people we had previously spoken with, had all made positive noises until they dropped a bombshell. Sorry but your son’s autistic so there’s no point proceeding any further. Er, what?!

Yes, of course you tick all the right boxes we were informed. Our house was perfect, we were perfect, our finances were perfect, our support network was perfect and our plans for my wife to take a year off work then reduce her hours was perfect. It was just that our gorgeous little lad would have had such a massive negative mark against us as a family that we would never be chosen by local authority placing social workers. We were told that we’d most likely go through the application process fine and get approved as adoptive parents but be forever confined to the back of the queue as we would be discriminated against for our disabled child no matter what glowing references we came with as a family.

We were disgusted, angry and heartbroken all over again at the final chance of expanding our family was removed and such hurtful discrimination could be aimed at our son who we love so much. Below is a response I presented to the local authority which summed up our emotions and thoughts at the time. Of course a bog standard reply was provided to this and we had reached the end of the road…

Firstly, thank you for coming to our home and discussing the application process. I know the decision has already been made and understand there’s little point in proceeding with our application to become adoptive parents due to the prejudice we would experience from placing social workers due to being parents of an autistic child. At the time I had a mixture of confusion, shock and disappointment when you had raised concerns of our son’s social interaction and the huge negative effect this would have on being chosen from a prospective adopters list. Since then I have to say my emotion has changed to anger and resentment.

We have a nice home, are in good health, a good support network, our finances are very secure and we have a proven track record of being devoted parents who will do everything they can to ensure a child has the best start in life. My wife, being a teacher, was also prepared to take a year off work to bond with the child and there after only work three days a week. The other two days they would have attended either the nursery attached to the school, or indeed the school itself, where my wife works so she would see them as much as possible.

To have all of these positives completely disregarded as our son is autistic and has social interaction issues is astonishing. Not only that it’s insulting towards my son that he is considered to be a worse impact on a child’s well being than a parent who could be morbidly obese, smoking or any of the other rules on who can be an adoptive parent that have recently been relaxed. Jake is a wonderful boy and once somebody gets to know him they will feel the same as would a child coming into the family. The negatives that a new child coming into the home may possibly feel rejected by him is a lazy excuse in my opinion by any placing social worker making that judgement. I could easily spin that on its head in that our son would be accepting of anyone coming into the family, he won’t try to force them out of the home, potentially bully them due to jealously, etc. Our experience of children coming into the home is that they take Jake for who he is and are fond of him regardless. It’s a real shame that adults in 2016 can’t do the same…

I think that we have shown, and would have demonstrated during the adoption process, that we have the patience, commitment and skills necessary to re-assure a new child coming into the home and make them feel part of the family. With all that being said people are people with their prejudices and preconceptions and as you have pointed out the system won’t allow for a placing social worker to have the time to get to better know our son and change their mind. That’s a real shame and quite discriminatory especially in this day and age. I imagine in twenty years time when people are more aware of autism this type of discrimination will be looked back on in horror.

In light of the current situation I would recommend *removed* council, and other authorities, amend their websites and literature to explain that families in our position should need not apply. During my initial phone calls with the adoption team, further email correspondence, contact with staff at the information meeting that we had attended and on the enquiry form we had submitted we had always stated that we have an autistic child with social and learning difficulties.

At no point previously had anyone raised concerns that it would it would be a pointless exercise and neither does the literature on the website. I think best practise would be to immediately raise concerns and inform parents that it’s a road not worth going down. Nobody we spoke to had done this and indeed during the home visit everything seemed to be going great until the discussion moved onto our son. Maybe we were naïve but from our point of view everything seemed to be going well during the home visit and we were ticking all of the boxes. It came as a complete shock to be told our son would unfairly dismiss us as potential adopters.

Even more disappointing isn’t the fact it would prevent us from passing the selection criteria and approved by the panel but that placing social workers would forever not choose us because of my son’s disability. It may be the harsh truth but it’s a very ugly one. We have worked hard, as has our son, to get to where he is now. He is well behaved, happy and doing well at school. Whilst he’s non verbal he’s making good progress and forming some basic sounds and words and his non verbal communication and comprehension is excellent as noted by his speech and language therapists. Indeed we had waited for a number of years to expand our family as we had wanted our son to get this stage where we are confident we have the time to devote to another child and our son is ready for a sibling.

I know you had made your judgement on our son based on the hour or so you had been able to observe him whilst you were talking to us about the adoption process. As would be the case if a placing social worker were to visit us. I would like it to be noted though that he had just come home from school and wanted to relax and play on his own which I think is pretty natural for most children. He isn’t a child who will normally initiate communication and at no time had you tried to get to know him or properly interact. One of my wife’s friends, whom he had never met, came round awhile ago and she made the effort to get out a blanket with some toys and they played a lovely game together with plenty of non-verbal communication. Last week we told him she was coming again and he immediately got the blanket and brought it to us. At first we didn’t realise why he did it until we remembered the game they had played which he obviously had enjoyed.

Whilst I do appreciate the honesty it would have been a lot easier to take if everyone we had talked to had raised their concerns. Also, I think if this is such a negative factor then surely instead of spending two hours talking about our reasons for adopting, finances, etc. a meeting should have been arranged where our son was in attendance and he could have been assessed first. Indeed if our son hadn’t of been at home how far down the road would we have been allowed to go with our hopes raised even further before they were finally dashed?

As my wife is no longer able to conceive naturally this is the end of the road for us which will take some time to come to terms with. We’ll bounce back as we always do and move on but I will never see sense or forgive those that judge our son and who cannot see that a child coming into our family would be content and lead a happy prosperous life.

 

Advertisements

Autism + food = Argh!

Our son has a small range of food and drink that he’ll acceptably consume and has done for a number of years now. Anything else is considered poison and to be avoided at all costs. There are of course many reasons for this be that routine, fearful of trying something new and super sensitivity to taste and smell. This was also one of signs that confirmed his autism to us before getting a diagnosis. As a baby/toddler he would pretty much eat anything within reason, curry vindaloo for example was not offered, but then suddenly instead of a buttered cheese sandwich he would only eat it without cheese, then without butter and finally not even the bread.

As other foods dropped off his accepted list one by one at around the age of four it settled down to a set range which didn’t change for a couple of years. It consisted of a bowl of porridge every day for breakfast, dry food snacks during the day, some fruit and a handful of set healthy meals in the evening. When out and about the only other food he would accept would be chips from McDonald’s or certain thick chips from a restaurant depending on how they were cooked and their shape. We counted ourselves fortunate as even though it isn’t a big range it’s a relatively healthy one consisting of enough fibre, fruit and vegetables.

IMG_9871

The only real challenge this ever causes us is when going away on holiday as we need to take all of Jake’s food with us. This usually consists of my wife and I sacrificing certain items so that we can squeeze in enough food for the holiday and still get under the baggage allowance. Who needs spare shoes and sun tan lotion anyway… The food is always spread over three suit cases just incase one gets lost to avoid a complete disaster. It’s probably always raised an eyebrow or two at the airport but only once have we had to persuade customs to let us keep all of it. After explaining the situation the kind person at U.S.  Customs allowed us to keep his pot meal dinners as long as we didn’t put the leftovers down the waste disposal.

Since his six birthday, almost a year ago now, he’s alarmingly been going backwards. There’s been a few positives with him eating ice cream for the first time, randomly eating a slice of bread whilst laughing to himself and always wanting to have a fish finger or sausage on his plate when we’re having them. He’ll happily hold the sausage/fish finger and study it but has never tasted one. Still it’s progress. However, he’s now stopped eating yogurts, Oatcakes, Crackers, Mini Crackers, Salt & Vinegar French Fries and McDonald’s chips. Apples and grapes also appear to be on the verge of being permanently on the banned list. This has led to a very small range that he will now eat if and he gives up any more it will cause a serious issue with him having a healthy diet.

As well as refusing to eat food he used to love he also can’t stand the sight or smell of them or others. If I were to eat a bag of the salt and vinegar crisps he’ll now jump on the sofa with his back to me and cover his face with his hands until I’m finished. As soon as I’m finished he’ll take the empty bag and put it in the bin and then he can relax again. Even though I tell him he doesn’t have to eat them he’s still upset and on edge at that fact they’re in the same room. When out at restaurants now he’ll sit on the chair with his back to us covering his face until we’ve finished eating where once he’d happily sit and eat food we’d brought with us and play with his toys. After finishing our dinner we now have to wait for dessert until he’s finished eating the poppadoms we brought with us.

IMG_9869The worst experience recently was when we went to the drive thru McDonald’s near our home. He used to love getting a happy meal. He only ever ate the chips but loved the toy and enjoyed choosing whether to include a burger or nuggets. As we pulled up to the restaurant we asked him if he wanted a happy meal and he kept shaking his head, he’s non-verbal, and got upset pointing to home. Despite telling him he didn’t have to get one and mummy and daddy were going to get something for themselves he became increasingly upset. This carried on until we got home where he went screaming and crying into the house before trying to take our meals away and put them in the bin. He eventually calmed down and went back to his old self as soon as we’d finished and the wrappers were disposed of.

Even though Jake is unable to speak he’s very good at communicating but on issues such as this he’s unable to get across why he doesn’t eat certain foods or can’t stand them near him. I suspect his senses have changed and certain smells are too much for him as well as textures. Some of it could be behavioral though but I can’t be sure. I think the time has come now for us to seek some professional help as we need him to start eating different types of foods again for his health and to tolerate others for his own benefit as it will prevent him from going to places in the future.

Other parents might say well don’t give him anything else until he eats what you want him failing to understand how hard it is for him. I know if we said there’s nothing else to he’s eaten a new type of food he’d starve and end up at hospital on a drip. We’ve tried bribery promising him new toys/etc. but to no avail. I just wish there was more I could do as food is yet another big hurdle for our little dude to overcome…

Is my child autistic?

A friend of ours, whose daughter is austic, recently asked us how we knew and when we got Jake’s diagnosis of autism. My wife and I had to cast our minds back and it re-iterated to us, with hindsight, how obvious it was and why it was quite a simple process to achieve confirmation from a paediatrician of ASD. We were told early on by a health professional that a doctor wouldn’t take us seriously until he was at least two years old but we had known long before this.

From the moment he was born Jake had trouble breast feeding and couldn’t latch on properly. He wasn’t putting on enough weight and was crying for more milk. After a week or two the midwife told us to put him on the bottle if it didn’t improve. I still remember now heading up to the supermarket at 3 AM to buy some baby food formula and getting back home to figure out what the hell to do with it! Even then we quickly discovered that we had to use the teets that enable the milk to come out easier that were for older babies. This wasn’t necessarily related to his Autism as Jake also has Dyspraxia but the two combined meant his co-ordination and ability to manipulate his body weren’t working as they should.

At the time we had put the above down to “not all children breast-feed successfully” and had thought nothing of it. As the weeks/months rolled on my wife, who was with Jake 24/7 started to pickup on the fact that he wouldn’t settle easily for a sleep or make eye contact with her. In fact she used to get him to sleep in the end by looking into his eyes whereup Jake would close his and finally drift off. The fact that we had also made a decision to put Jake to sleep downstairs during the day in a cot wasn’t helping as there was too much noise and light. We had thought lets get him use to being able to sleep anywhere but of course to him this was a complete sensory overload. My wife grew suspicious that something wasn’t quite right.

As he got older my wife grew concerned and she was becoming upset at the fact that at six months old Jake was crying endlessly at times and she didn’t know what was wrong. He’d also get extremely upset when she attempted to take him out to playgroups and nine times out of ten she would have to leave and come back home. Upon returning home he’d settle down and was fine. Looking back it was just too noisy, too much going on, too many people and he couldn’t cope. I’d often come home to Jake screaming/crying with my wife also in tears not knowing what was wrong but knowing something wasn’t right but wrongly blaming herself too. Friends, family and health professionals would just say the same re-assuring things along the lines of every child is different and develops in their own way.

More months rolled on and Jake started to play with toys, crawl and stand. This was probably the time we knew something was definetely not right and we needed to research. His playing with toys consisted of choosing the same ones and doing the same things with them over and over again. The favourite being the stacking cups which he would just endlessley spin around and around along with lining them up in the same order over and over again. He started to crawl but could only go backwards and went from this to standing. He never crawled forwards in the end. Between the ages of one and two when he started walking he would be extremely unsteady on his feet and constantly banging into things/falling over far more than children of the same age. Again this was more linked to his Dyspraxia we later learnt as his core muscles and co-ordination were not developing as normal.

The final confirmation for us was between 12 – 18 months when he had started to talk and had about a dozen words in his vocabulary. One day he suddenly stopped and would say nothing. We’d already done our research and had strong suspicions. This just re-enforced our belief that our son had autism and we were ready to get a diagnosis to then get the help that we needed and was available. The nearer he got to two years old the more apparent his condition as he was still not talking, still obsessed with spinning cups, playing with the same toys, not interacting with anyone, oblivious to the world around him, sensitive to noise, sensitive to light and more besides.

Not long after his second birthday we had gone to your local GP and explained his symptoms and our diagnosis. Whilst in the doctor’s room Jake just ran from one side of the room to the other laughing to himself completely oblivious to the world around him. It took five minutes for the very nice doctor to give us a referral to a specialist paediatrician. Awaiting our next appointment other incidents would occur with Jake getting extremely distressed at light coming into the car on his face or the hoover in the house being too loud both overloading his senses. The solution having to get tinted windows for the car and only hoovering when Jake was on another floor in the house. Food had also become an issue and where he would once eat buttered cheese sandwiches he regressed firstly he ate them without the cheese, then without the butter before finally not even the bread. He still doesn’t to this day and has an acceptable range of food and drink that hasn’t changed for years.

A few weeks later we went to the hospital to see the specialist and again it didn’t take very long for her to come to a conclusion. Five years on I still remember it now in response to my question “So do you think he’s autistic?” she replied in a thick Australian accent “well, it’s bloody obvious isn’t it”. That made us chuckle and even though it was confirmation from a professional that Jake had a mental illness it meant that he could get all the help that he needed to improve his life. It also meant that fiends/family who were in complete denial and insisted that there was nothing wrong and he would “grow out of it and catch up” could finally be told to sod off!

Gemiini – S&L for Autism

Gemiini is a speech and language programme where the student watches a wide variety of videos a number of times in order that what is being said and the actions shown eventually sink in. The eventual hope is that they will copy the actions and repeat the words. It’s an old method of learning but with a modern twist and autistim in mind.

It’s been a few months now since we’ve started using Gemiini opting for the basic pre-defind programme designed for the progression of speech. Our six year old non verbal autistic son enjoys watching the videos and does take an interest in what’s being said and done by the actors. Sometimes the clips will include a musical interlude with a child playing with a toy, going on a boat, etc. which works really well and keeps the student engaged. Videos will consist of different subjects and topics in one session keeping it fresh along with the different focus from close ups of the mouth, pictures of the subject matter and clips of people performing the actions of what’s being said.

IMG_2129It works really well. Basic but clear. The aim is to work in three fifthteen minute sessions per day. This works well into our daily routine. The first session is with breakfast, the second when he gets home from school and the last after dinner. Each video is to be watched forty times before moving onto the next. As an adult this is painstaking but to be fair our son doesn’t seem to mind.

As to how effective it has been for me the jury’s out though. Whilst Jake has just started copying the actions on the latest two videos (pointing/waving/blinking) he could do all of these before. He had been making lots of noises and sounds before embarking on the Gemiini programme, and has been having lots of speech and language therapy, so the additional sounds he has made recently could or could not be related. I wouldn’t say any great strides have been made.

We’ll carry on using the programme as it works well into our routine and Jake seems to enjoy it. It’s educational if nothing else. I know it’s a bit unrealistic but I think unless he starts saying out loud suddenly the words being said in the video I’m going to be a bit sceptical as to it’s success. However, I’m also aware different therapies work for different people so I would recommend that if you have a child with speech and language difficulties then give this a go. It’s also not that expensive!

Autism Friendly Musicals – Wicked!

wicked
Wicked the Musical
There’s more work to be done to raise awareness and for more autism friendly events to be organised but I’m still grateful that we’re at a time where progress has been made. Ten years ago there would never have been such a thing but in recent years the National Autistic Society has been doing great work in conjunction with the West End to put on autism friendly performances of the latest hit musicals.

This year the N.A.S. have worked in conjunction with the Apollo Theatre and long running west end musical Wicked to put on a performance designed with autistic people in mind. The sound and lighting had been adjusted along with chill out zones setup for when it got too much for the audience members. There were plenty of volunteers on hand to greet everyone as they made their way into the theatre, get to their seats and assist with any other issues they had. There was even a room for the children to go and do some colouring before the show. Oh and the ticket prices had been vastly reduced to make it affordable to more people which was great to see in this day and age.

It was a wonderfully relaxed atmosphere with nobody staring, judging or being awkward around you. It was delightful to see my son and all the other autistic adults and children enjoying the experience and performance. There was some screeching, random clapping and various other noises coming from all parts of the auditorium during the performance but this was accepted as par for the course by all the audience and cast alike. It mattered not as everyone thoroughly enjoyed themselves getting to do something that families might not often get the opportunity to take part in.

My son is non verbal but makes a lot of sounds especially when excited. During the singing he started to flap his arms and occasionally make noise as a release. We asked him to remember to use his inside voice but it was relaxing to know if he couldn’t we wouldn’t have to consider leaving. At the interval we went for a walk and he had a good run around and dance in the main entrance area to get ready for the 2nd act. Nobody batted an eyelid they were too busy enjoying themselves and understood.

My thanks go out to everyone involved from the charity, the staff, the volunteers and of course the cast for putting on a magnificent performance and giving the audience some terrific memories that will last a long time. I’m already looking forward to seeing what musical signs up for 2017!

Talking to a brick wall…

Getting my son ready for school again today and had a lapse falling back into bad dad mode… Various changes have been previously made to the morning routine to make life easier, it now goes Breakfast > Gemiini (work) > Dressed > Teeth > iPad > Bus. This works well most days and leaves enough “faffing” time for Jake to get his toys sorted out and him out the door. Today though it didn’t quite go as smoothly but on reflection it was all my fault.

It started to go wrong when I looked at the clock and we were way ahead of schedule so I gave him a bit longer on the iPad. BIG MISTAKE. His go ended and I suddenly noticed he hadn’t got any of his toys out in their positions on the floor / table. This is a very long winded process of touching the toys/reading the books/etc. and placing them all in the exact position he needs them to be in so he’s at ease and will leave the house. Normally this task is done the night before but sometimes when he’s tired and goes to be early it doesn’t happen.

What led next was me asking nicely for him to hurry up, looking at the clock, getting more anxious, my voice getting louder, asking again, and again and finally shouting at him to hurry up as I have visions of the bus turning up and having to leave without him. This would then lead to a massive meltdown, me being late for work and nobody happy. However, as I know from past experience shouting and repeatedly asking for something to be down has absolutely zero affect on him in these situations. He has tunnel vision and is oblivious to whatever is going on in the world around him, or being said, and he is solely focused on the task at hand.

I know this and usually leave the room at this point to stop myself getting frustrated at a situation outside of my control or talking to somebody who can’t hear me. This morning I was unfair on him, it’s not his fault, it’s mine. I should have seen what he would have needed to do and not increased the go on the iPad and hurried the morning along earlier.

Luckily the bus was late and Jake had just enough time to complete the task at hand, 2o minutes later, and get on the bus. I was left feeling guilty for not seeing it from his point of view and for shouting. Six years down the line and I sometimes still forget what it’s like to live in his world…

Tui Na Massage for Autism – Verdict

After finishing our commitment to a six month trial we decided not to continue with the massage for our autistic son. Yes, there had been a slight improvement with his fine motor skills and possibly overall sensitivity but not enough that you couldn’t say would have happened naturally or with the other therapies and work done by us and the school.

Other parents reported more progress with their child in terms of physical and social interaction whilst others reported none. Towards then end of the trial Jake himself had grown tired of the daily ritual and was starting to be difficult at laying still and it became counter productive and meant that the entire evening schedule got pushed back meaning later to bed and more tired the next day.

I’m glad that we had given this treatment a go but had decided no noticeable improvements had been made and had decided to direct the time spent performing the massage on other therapies that will hopefully improve our son’s verbal communication such as the Gemiini program.

In summary I wouldn’t put other parents off trying this treatment as you can understand the logic and there aren’t any negatives but for us there were hardly any positives but then different things work for different people.